Reflections on Virginia’s Election Results

Democrats are licking their wounds after Republicans won the top three posts for governor, lieutenant governor and attorney general by an overwhelming margin in this past Tuesday’s election in Virginia. Bob McDonnell won the governorship with 59% of the vote to Creigh Deeds’ 41%. What happened? Republicans showed up, and Democrats stayed home.

Cursory examination of the electorate reveals that nearly half of the 3.8 million voters in Virginia last year didn’t show this go round. Those who did show were disproportionately Republican voters.

Young voters comprised only 10% of this year’s electorate compared with 21% a year ago. And the proportion of the electorate made up of African Americans dropped this year from 20% to 16%.

The question is “Is this trend likely to carry through in the non-presidential electorate in 2010?”

It’s easy to chalk up this year’s election results to off-year elections, which are often low turnout and tend to be anti-incumbent if the economy is bad. Some postulate the Democrats’ loss was tied to public unrest over President Barack Obama’s performance to date and Congressional “politics as usual” maneuverings. If you ask me, this sounds like “It’s not about me, if I lose” rationalization.

It’s about time the Democrats in Virginia take a cold, hard look at what compelled voters to turn out for Obama last year and take a lesson from his playbook. Marginal voters showed up for Obama because, for once, they felt like someone cared about their issues. He gave them hope that, having seen firsthand some of the strife many Americans encounter daily, someone would take their concerns seriously. There was a connection that compelled these voters into action.

Based upon my personal interactions with staff of my four state and federal Democratic elected officials, there is no connection. In fact, conversations left me feeling like we were living on two separate planets. And for those of us, who like me, are now disabled living on social security disability payments and are unable to fork over the thousands of dollars I assume it would take in campaign contributions to get five minutes of face time with my elected representative, staff represent the frontline. Staffs reflect politicians’ views and demeanor to their constituencies.

Let me relay just one example of such interaction to illustrate my point. It involves a conversation that occurred in late October with Donna Kloch, a case worker in the Office of Congressman Jim Moran.

Kloch sent me an e-mail on October 19, 2009 in response to my correspondence to Congressman Moran sent quite some time ago. I’d written regarding my dysfunctional experiences with my medical insurer and doctors that left me disabled unnecessarily. In hindsight, I can see the e-mail was nothing more than another referral — this time to the Virginia Bureau of Insurance in Richmond. But when I received it, I was elated at just being acknowledged by anyone in Moran’s office. Plus she asked me to give her a call to discuss the matter.

As it goes, health insurance companies were exempted from antitrust laws with the adoption of the McCarran-Ferguson Act of 1945, which allows for state but not federal regulation of medical insurers. Currently, there is bipartisan support in Congress to move such regulation authority back to the feds. For some unknown reason, I thought she wanted to hear about my experiences with the Virginia Insurance Commission to use as an example in determining whether the Congressman should support such legislation.

Being chronically ill with major brain fog, it takes me longer than most are willing to wait to verbalize my thoughts. So I e-mailed her my thoughts on and experience with attempting to file a complaint against Cigna HealthCare with the Virginia Bureau of Insurance.

I told her that I started to file a complaint but wasn’t sure which of the two forms on the Bureau’s website to use even after reading the instructions for filing a complaint. When I called the Bureau for direction, whoever answered the phone (allegedly the only person I could speak with) kept repeating that such determination could not be made without seeing the complaint in writing submitted with copies of all relevant materials and correspondence.

My complaint is that Cigna ignored multiple complaints I made against several of its providers for failing to diagnose and treat me — a violation of the tenets Cigna espouses in its Code of Ethics and Compliance, which is referenced in materials given to its members and in Cigna’s SEC filings. Cigna’s Code includes a Patient’s Bill of Rights that declares its members have a right to be heard and receive quality medical care. Cigna executives and board members are obligated to oversee that their employees are following its policies and procedures in line with its Patient Bill of Rights.

To be heard, Cigna members are instructed to call Member Services (customer care) at the toll-free phone number on the Cigna HealthCare ID card. If Member Services cannot resolve the member’s concerns, care reps are supposed to provide information about how to have the member’s concerns addressed.

Yet, on several occasions, Cigna Member Services refused to take seriously my complaints about the lack of quality provider care or provide me with an alternative method of complaint. Cigna’s customer care reps told me that Cigna’s computer system could not accommodate recordation of complaints, and that there was no address where my complaints could be mailed or other persons to whom I could voice my complaint.

A quick internet search revealed numerous incidents in which some state insurance commissions had imposed fines on Cigna and other medical insurers for repeatedly neglecting consumer complaints. Virginia’s Bureau of Insurance was not among them. In fact, Kloch commented that she was not aware that Virginia’s insurance commission had ever taken action against a medical insurer.

My e-mail to Kloch included specific dates and names of Cigna representatives I contacted in my effort to attain competent medical care. It also reflected on the reasons I ultimately decided not to file a complaint with the insurance bureau. Paramount among the reasons is Virginia’s reputation as the #1 pro-business state in the nation and the potentially detrimental toll that the emotional stress of having to recall my experiences would have on my already diminished health status.

In our phone conversation, Kloch suggested that I contact my state representatives for assistance since medical insurers were regulated by the state and not the federal government, so Moran’s office could not help me. I told her that I had already contacted the offices of my state representatives, Mary Margaret Whipple and Adam Ebbin, not about the state insurance bureau but about my inability to find a doctor who would do more than refer me to other specialists and about the insurer’s total disregard for its member’s plight.

Kloch wanted to know how they responded. I said their assistants told me to “hire an attorney” because elected officials don’t get involved in personal matters. I said I didn’t think my message ever actually made it to the state senator and delegate. “Why would you think that?” she asked, then assured me that my inquiry most certainly would have been addressed by the elected representatives themselves.

While she said she was trying to help me, it soon became clear that her definition of help amounted to the same level of help I received from doctors — a dead-end referral — often to someone or some entity I’d previously contacted. The demeanor of the phone conversation conjured up the image of Virginia’s legislators standing shoulder to shoulder in a circle — each pointing to the guy on the right. I felt like little more than a morsel weighing down someone’s plate — a crumb easily wiped away to give someone the illusion they were competent and efficient.

Kloch was under the impression that it was easy for the injured to retain a medical malpractice attorney on a contingency basis, which to her, implied that no upfront cash outlay was required. She didn’t believe me when I told her that, in all medical malpractice cases, win or lose, the injured party is responsible for paying the expenses of the case. (Rule 1.8(e) of the Virginia Rules of Professional Responsibility for Attorneys.) By contacting several such attorneys, I found that the expenses for witnesses, medical records, review fees, photocopying, postage and the like can range from $25,000 to $40,000 and up. I also found that the injured’s ability to pay for expenses upfront is the paramount criterion used by attorneys to determine whether to take a case.

To me, suggesting to someone that he or she hire an attorney after the person just relayed his plight of becoming destitute and disabled, having spent all his resources fruitlessly seeking competent medical care, is a bit ludicrous. Yet, Kloch and others I contacted were not newcomers to politics or the issues. The dichotomy I felt seemed to stem from one party’s inability to comprehend what the other was going through. There was no frame of reference, and this frustrated the politicians’ aides. They couldn’t understand why I wasn’t grateful for their referrals.

At one point in our conversation, I broke down and started crying. I was trying to explain what it was like being chronically ill and disabled, taking ten times longer to accomplish anything… “Can you imagine what it is like to do your job with a bad flu that never goes away?” I asked. “No, I can’t,” Kloch responded empathetically. “You need to get some help.”

I could feel my stomach tense anticipating the direction of the conversation — deflecting away from the larger issue about health care dysfunction and medical insurers’ disregard to my personal need to reach out to family and friends for help with daily living activities. My reaction brought to light how sensitive I remained to my orphan-like status, the daughter of deceased immigrants, whose European and South Americans relatives I’ve never met, and who don’t speak English. I felt how sensitive I remained at how insensitive others can be at someone’s not having accessible family or family in a position to help — not that they should be so burdened.

Friends? In mid and later life, friends have their own families and problems. Plus there’s a predominant ingrained societal belief in doctors’ infallibility, particularly among those who haven’t experienced chronic illness firsthand. It’s unfathomable for most to believe that multiple doctors wouldn’t diagnose and treat a paying patient. Patients who, at a glance, don’t appear to be in distress are characterized as mentally unstable and prime candidates for antipsychotics.

My neighbors are caring, good-hearted people who’ve offered to help in any way they can. They referred me to their doctors, helped me with chores and offered moral and spiritual support for which I am most grateful.

But these people aren’t political insiders who know how to work the system to affect change. To me, that’s the job of my elected officials. And this past Tuesday’s resounding Republican victory in Virginia is proof positive that the incumbent Democrats are falling down on the job. This past Tuesday, voters took their legislators’ advice and hired an attorney, Bob McDonnell, as Virginia’s next governor.

McDonnell campaigned on a platform of being a problem solver, not a problem referrer. During our conversation, Kloch asked me, “What’s wrong with referrals?” I responded, “At some point, someone has to be responsible for diagnosis and treatment.” “I would hope so,” she said.

Are Medical Insurers Sacred Cows?

Health insurance companies are a powerful industry not easily provoked, pushed or intimidated into doing anything. This arrogance persists even after they’ve been fined millions for having failed their members and providers time and again.

In a June 2009 report, Health Care for America Now outlined the habitual abuses perpetrated by health insurance companies. The abuses run the gamut of denying coverage, preventing doctors from delivering medically necessary care, unduly delaying reimbursements to providers and patients as well as leaving patients with high out-of-pockets costs.

These are but a smattering of the lengthy listings of complaints filed against health insurers. A quick internet search reveals a multitude of settled and pending lawsuits against various U.S. health insurers for the same types of abuses they committed in prior years.

These insurers see the fines and settlement fees as a cost of doing business that is either passed on to members by hiking policy premiums or are paid out of business insurance proceeds.

They’ve spent tens of millions of dollars lobbying Congress against adopting a public option for fear that competition would cut into their market share. And while they talk of cooperating to lower health care costs, doing anything that would intentionally decrease shareholder profits is a breach of their fiduciary duty as a for-profit company. As a result, they have yet to commit a dime towards doing anything to lower health care costs.

Personally, I’m a proponent of capitalism and every American’s right to pursue his dream. But there is a means to an end, and in America, there are supposed to be laws that are enforced by government agencies to protect its citizenry from fraudulent and harmful practices.

The current state of our economy is proof plenty of the tremendous influence the moneyed had in convincing our political leaders to tie the hands of U.S. enforcers in many fields, including health care. Yet evidence of such abuse continues unabated. Let me provide you with a few examples to demonstrate the extent of the problem.

In testimony before the U.S. Senate Committee on Commerce, Science and Transportation on June 24, 2009, former health insurance executive Wendell Potter revealed ways for-profit insurance companies intentionally make U.S. health care both the most expensive and most dysfunctional in the world.

Potter, who recently left his post as head of corporate communications for CIGNA Corp. after 16 years, told committee members, “Insurers make promises they have no intention of keeping, they flout regulations designed to protect consumers…” He called the insurance industry’s effort to derail health care reform “duplicitous” and a well financed PR and lobbying campaign that may well shape reform in a way that benefits Wall Street far more than average Americans.

He described how Wall Street investors view what’s called “the medical loss ratio” as a crucial indicator for determining the value of stock. The medical loss ratio is a measure used to determine how much the company pays out in claims as opposed to what is left over to cover sales, marketing, underwriting and other administrative expenses, including profits. He said that ratio has been shrinking since the industry has become dominated by for-profit insurance companies.

He said insurers keep medical loss ratios in check by culling the sick from their rolls. He cited a 2004 Wall Street Journal report describing how Aetna spent $20 million to revamp its computer systems so that it could shed some 8 million subscribers with the highest number of claims. One way insurers purge accounts, he said, is by raising the cost of premiums and deductibles to levels so unreasonable, the employers stop offering the plans to their employees.

According to the National Small Business Association, the purging of less profitable accounts through intentionally unrealistic rate increases helps explain why the number of small businesses offering coverage to their employees fell from 61 percent to 38 percent since 1993.

Another method insurers use to purge costly accounts, he said, is through policy rescission. Here, the insurer looks to find if the policyholder omitted a minor illness, a pre-existing condition, when applying for coverage, and then uses that as a justification for canceling the policy.

In an interview with Bill Moyers, Potter said, “At the executive level, you think about the numbers and whether you’re going to meet Wall Street’s expectations. You don’t think about the people. I didn’t put faces with the numbers.”

A study by PricewaterhouseCoopers last year revealed just how successful insurers’ purging actions were over the last decade. The accounting firm found that the collective medical loss ratios of the seven largest for-profit insurers fell from an average of 85.3 percent in 1998 to 81.6 percent in 2008. That translates into an additional several billion dollars for insurance company shareholders and executives at the expense of health care providers and their patients.

Potter blames these practices on the industry’s consolidation over the last 15 years into one dominated by what he called “a cartel” of large for-profit insurers, who don’t want any competitors, particularly from a public plan.

Such thinking flies in the face of belief in an economic system in which prices and the availability of goods and services is determined primarily by the free market. In fact, the Sherman Antitrust Act requires the U.S. federal government to investigate and pursue companies and organizations suspected of forming cartels and monopolies.

In the Golden Age of Motion Pictures, for example, the Sherman Antitrust Act was used to break up the lock the motion picture industry had on not only producing movies but also showing movies in studio-owned theatres.

The Act attempts to prevent a monopolist from artificially preserving his status and from nefarious dealings to create a monopoly. As explained by the U.S. Supreme Court in Spectrum Sports, Inc. v. McQuillan: “The purpose of the Act is not to protect businesses from the working of the market; it is to protect the public from the failure of the market. The law directs itself not against conduct which is competitive, even severely so, but against conduct which unfairly tends to destroy competition itself.”

Curiously, health care insurers were exempted from anti-trust laws because of the McCarran-Ferguson Act of 1945, which allows for state but not federal anti-trust regulation.

As part of his PR job at CIGNA, Potter said he developed rapid-response mechanisms for handling media inquiries pertaining to member and provider complaints. He also had a hand in developing the strategy insurers used to defeat the last national health care reform effort under President Bill Clinton that is still being used this go round.

That strategy entailed issuing “talking point” crib sheets that instructed members of Congress and others to first pretend to support health care reform, and then use phrases such as “delayed care is denied care,” “government takeover,” “consequences of rationing,” “bureaucrats not doctors will decide your care…” Potter said “Politicians mouthed the taking points CIGNA perpetrated.”

In his June testimony, Potter described how during the last national health care reform debate, the president of CIGNA’s health care division was one of three industry executives who assured members of Congress they enthusiastically supported specific goals to cover all Americans; eliminate underwriting practices like pre-existing condition exclusions and cherry-picking. Potter said industry executives are making these same assurances today — only this time, the industry is bigger, richer and stronger. He said it has the money to buy access to have its arguments heard when the average U.S. citizen does not.

On July 21, 2009, The Washington Post reported on the extent to which industry cash flowed to drafters of reform. The article talked about how Senate Finance Committee Chair Sen. Max Baucus (D-Mont.) emerged as a leading recipient of Senate campaign contributions from the hospitals, insurers and other medical interest groups hoping to shape reform legislation to their advantage. According to the Post article, Baucus political committees received nearly $1.5 million in 2007 and 2008, when he began holding hearings and making preparations for this year’s reform debate.

Overall, the health care sector gave nearly $170 million to federal lawmakers in 2007 and 2008, according to data compiled by the Center for Responsive Politics, which tracks money in politics. But, according to Potter, this money did not come without strings attached.

In his Bill Moyers interview, Potter described how health care lobbyists got their message, “Do as we say, or we can make things tough for you,” through to elected officials. He said that if politicians didn’t cooperate, health insurers would run uncomplimentary ads in their districts during re-election campaigns or contribute money to their opponents.

Further evidence of health insurers’ raw dealings is easy to come by with a simple internet search.

Among them are numerous incidents in which state insurance commissions imposed fines on insurers for neglecting consumer complaints for prolonged periods. In some instances, the cited insurer also pledged to take steps to prevent the recurrence of the customer service violations as CIGNA did in January 2006 before the New York State Insurance Department. In this instance, CIGNA Healthcare of New York, Inc. was fined $150,000 for failing to respond to consumer complaints within 15 business days, a statutory deadline the state said CIGNA repeatedly failed to meet.

In July 2007, a federal judge granted final approval of a $93 million settlement in a securities fraud suit against CIGNA Corp. that accused the company of hiding the fact that it was experiencing significant problems in an overhaul of its computer systems and that its stock price had plummeted by 45 percent when news of the problem was disclosed. According to a press release dated August 15, 2007, on July 13, 2007, the U.S. District Court for the Eastern District of Pennsylvania granted final approval of an attorneys’ fees award in the amount of $21,390,000, representing 23% of a $93 million securities fraud class settlement.

In February 2009, the Medical Society of New Jersey and the American Medical Association (AMA) filed complaints in the U.S. District Court of New Jersey against Aetna Health Inc. and CIGNA Corp. for allegedly underpaying physicians that do not participate in their networks. The legal action was joined by the Connecticut State Medical Society, the Medical Society of the State of New York, the North Carolina Medical Society, and the Texas Medical Association.

The separate proposed class-action lawsuits allege violations of the federal Racketeer Influenced and Corrupt Organizations Act, the Employee Retirement Income Security Act and the Sherman Antitrust Act.

At the center of these complaints is the use of the Ingenix database, owned by United Health Group, a national health insurance company. United sold access to the Ingenix data to both CIGNA and Aetna, which used the data to set fees for out-of-network providers. The Ingenix databases and United were investigated by New York Attorney General Andrew Cuomo, who alleged the database was rigged and ripped off consumers of hundreds of millions of dollars.

In January 2009, UnitedHealth reached a $50 million settlement with Cuomo. In a separate class action lawsuit brought by the AMA, state medical societies, health care providers and health plan members, UnitedHealth agreed to pay $350 million.

Subsequently, on March 25, 2009, a class action lawsuit was filed in federal court in California alleging that Wellpoint engaged in a conspiracy with other health plans to fix prices and underpay physicians for out-of-network services. The AMA, California Medical Association, Connecticut State Medical Society and the Medical Association of Georgia have also joined the Wellpoint lawsuit.

These are but a few of the examples I found. The list of suits and complaints against health insurers for repeat violations continues to mount.

In light of this, I have to ask, where are the government enforcers? Is our government powerless to curtail such rampant and blatant abuse within the health care industry? What about the untruthful marketing representations that seem to violate Regulation Z? What has the SEC done to investigate the Sarbanes Oxley violations alleged in the 2007 U.S. District Court securities fraud suit? What happens if and when corporate liability insurers stop paying suit settlements?

I never knew our health insurers were such sacred cows.

What Would You Do? What Others Said.

(The next in a series of blogs on my quest for competent health care.)

What would you do to get treatment for a rare disease treatable with penicillin that seemingly no U.S. doctor is familiar with? What would you do to get treatment now that your funds have been depleted on living expenses, futile doctor visits, and you were too ill to work?

I really want your advice and comments because I’m running out of ideas.

After years of suffering ill health and going to doctor after doctor to no avail, I finally figured out that the root cause of my illness is actinomycosis. The bacterial infection is treatable with an initial three week IV infusion of penicillin followed by long term oral administration of penicillin tablets and ancillary surgery, if needed.

Additional measures may be necessary to address Candida, Staph and other infections that often accompany the disease. With treatment, there is up to a 90% cure rate.

Without treatment, the patient experiences degeneration of the spine along with dysfunction of the organs corresponding with the affected areas of the central nervous system. The illness is debilitating and painful.

Of the many individuals, organizations and government officials that I’ve approached for help, I mostly got dead end referrals.

Two of my neighbors who had undergone surgery with Dr. Esam Omeish were adamant that I make an appointment to see him. Dr. Omeish, who is currently running for state delegate in Virginia, served on the board of a number of non-profit organizations.

Because he had chaired the board of a community medical clinic and provided free service to the uninsured and the needy, they thought he would be sympathetic to my plight and at least listen to my concerns. In fact, the first issue listed on his campaign website is accessible, quality healthcare.

However, when I contacted his private practice, Paula, an office assistant, told me that Dr. Omeish refused to see me because I had already been seen and had a colonoscopy and an SBFT performed by other doctors at INOVA Alexandria Hospital, where he worked as Chief of General Surgery.

There is a code of silence among medical practitioners. No doctor can speak contrarily about the work of another doctor, even if he knows mistakes were made. Medical politics requires this silence to ward off the potential of the patient’s filing a medical malpractice suit.

It’s said that testifying against a colleague would amount to career suicide. The medical profession runs much like an elitist club with strict rules devoid of moral considerations. The club code requires doctors to honor each others’ opinions to uphold their reputations.

Consider the cost to the healthcare system from all of this back scratching and patient neglect.

Having read such books as Wall of Silence and The Medical Malpractice Myth, I knew about this sacred comradery among doctors and tried to explain it to my neighbors. They couldn’t believe that Dr. Omeish would not see me and insisted that this response was coming from his assistants, not him.

So they decided that one of them would take me along on an appointment. They assumed that once Dr. Omeish met me face to face, surely he would set up an appointment.

Not long thereafter I found myself sitting quietly in the waiting room while my neighbor went in for his appointment. After the appointment, Dr. Omeish walked my neighbor to the door separating the exam rooms from the waiting room, where he saw me sitting. He turned and walked back toward the exam rooms without even saying hello.

My neighbor called me to the reception desk where he was checking out and told me that Dr. Omeish wanted to see my medical records before deciding if he would agree to a consult. The office assistant confirmed I was to go home and return that afternoon with copies of my records for his review. I complied.

By the time I returned, however, Dr. Omeish had already left for the day. He was not expected back in the Falls Church office for another week. My medical record was eventually taken to Omeish’s Alexandria office, where I picked it up a few weeks later.

The rubber band that I had placed around the paperwork was in the exact same place as it was when I dropped the records off. He hadn’t even looked at them. His answer via the receptionist was the same. He wouldn’t see me because I had been seen by a gastroenterologist, Dr. Ronald Barkin, affiliated with the same hospital where he worked.

Dr. Omeish could have easily gone into the records at the hospital and checked my abdominal x-rays to see for himself whether I needed surgery as I contended. He didn’t.

Others offering advise suggested I contact support groups for insight into assistance finding help. There is no support group for patients with actinomycosis. I ended up starting a forum on the disease on www.MDJunction.com. There are two participants besides me to date.

Some recommended that I contact various government agencies and apply for social services like Medicaid since I’m too young to qualify for Medicare.

I found states have the option of participating in the federal Medicaid program, and Virginia only provides Medicaid to women during their pregnancy and to children. My application for Social Security Disability was approved in November 2008. However, even with the Disability award, I would have to wait until August 2009 before Medicare coverage kicked in.

At one point, my journey led me to Dr. James Bona in FDA’s Office of Orphan Products Development. He works with pharmaceutical companies in designing drugs to treat rare diseases. Dr. Bona referred me to Dr. Steve Groft at The National Institutes of Health.

Dr. Groft is Director of NIH’s Undiagnosed Diseases Program. Here, NIH doctors work in conjunction with the treating patient’s doctor to diagnose and recommend treatments for patients accepted into the program. Dr. Bona thought I would be an excellent candidate given that my diagnosis had eluded so many physicians over the years.

I spoke directly with Dr. Groft on a few occasions, and he agreed. The one catch was that I did not have a treating physician, which is prerequisite for program participation.

In his last e-mail to me on December 10, 2008, Dr. Bona wrote: “Spoke with Dr. Groft who said he is continuing to try and identify a physician at NIH to assist you. It is especially difficult since one of their main criterian for acceptance to their program is for you to have a treating physician of your own who can converse with the physicians at NIH, who can initially refer you, and most importantly, who can continue treatment outside the NIH when and if the NIH folks can discover the best course of therapy. The therapy would not be at the NIH. They’re primary goal would be to help diagnose what’s going on. Treatment would fall onto your private physician.”

I was somewhat surprised that the few doctors I asked to participate in this program on my behalf refused. I got the distinct impression that they felt that they didn’t need another doctor to help them diagnose or treat me, or that to do so would be an affront on their reputation. Even clinical trials require a doctor’s referral.

Dr. Bona encouraged me to contact non-profit organizations, such as the National Organization of Rare Diseases (NORD), Inod.org, and undiagnosed-usa.org. I found these and other health-oriented non-profit organizations don’t actually help patients; they just write about helping patients.

NORD serves as a clearinghouse of information on various rare diseases. It didn’t even have actinomycosis listed.

NORD suggested searching PubMed articles on actinomycosis and then contacting the physician authors. Physician authors of articles on actinomycosis that I contacted were either retired or, as research physicians, didn’t see patients.

Undiagnosed-usa only deals with children who have rare or undiagnosed diseases. The Inod executive director had no clue as to whom I should contact to find medical help.

Some suggested I obtain legal representation to obtain medical care. The dozen malpractice attorneys I contacted who advertise taking cases on a contingency basis, I found, don’t actually represent clients on contingency if the case appears to them as complicated and time consuming.

I was referred to Washingtonian magazine’s list of top area infectious diseases doctors. (Several doctors described the list as primarily a popularity contest — I’ll-vote-for-you-if-you-vote-for-me type deal.) Of the dozen physicians listed with infectious diseases specialties, only a handful did not list specific sub-specialties. I’d already been to the office of two of those listed, Dr. Donald Poretz and Dr. Allan Morrison to no avail. (Blog #4 provides a detailed account of my experiences.)

One time I heard Jonathan Weiner, Johns Hopkins University professor of health policy and management on The Diane Rehm Show, so I contacted him for assistance. (When Diane Rehm had difficulty locating a physician knowledgeable about spasmodic dysphonia, she went to Johns Hopkins without a referral and was diagnosed within one hour by a JHU physician who treated her at the same visit.)

Professor Weiner suggested that I make an appointment with JHU’s Infectious Diseases Division physicians. He even had the administrative assistant call me to set up the consult. But when I didn’t have a doctor referral stating the diagnosis already, she refused to make the appointment stating that it was JHU policy that all patients must have a doctor’s referral to be seen and the referral must state the diagnosis so that JHU physicians will know upfront if they will be able to help the patient.

When I repeated this unbelievable response to Professor Weiner, he said he could not believe that a JHU physician would not see me for an initial consult because I did not have a doctor’s referral. Keep in mind, everyone acknowledged I did not have health insurance coverage, so the need for a referral had nothing to do with requirements for insurance reimbursement.

Professor Weiner suggested that I file a complaint with JHU Patient Relations. I did.

To cut to the chase, on January 13, 2009, I received a letter from Dr. Paul G. Auwaerter, Clinical Director, Division of Infectious Diseases, Johns Hopkins University, in response to Patient Complaint #12610. It stated:
“Dear Ms. Gardiner: I have been notified through the JHMS Patient Relations of your complaint regarding some telephone calls in order to set up an appointment in our Division of Infectious Diseases. As you were appropriately told, we ask that patients be referred by their physician with a specific question(s). Since we have limited faculty and limited appointment times, this is how we can best determine how to help the patients most in need.”

I want to add that when I was trying to set up the appointment, I faxed over a pathology report positive for actinomycotic granules as well as other lab and radiograph reports demonstrating the features seen in patients with actinomycosis. JHU said the tests weren’t current enough and would have to be redone.

I’ve been referred to various religious organizations so that I can better let go and accept what I cannot change. (I stopped socializing when it became apparent to me that I was a walking petri dish, extremely susceptible to catching and possibly transmitting illness to others.) I tried letting go — putting myself totally in the hands of God — but the saying, “God helps those who help themselves” kept resonating in my mind. I kept thinking that if I was lost in a forest, it’s unlikely that I’d just sit down and wait to be rescued.

I keep believing that there is one person in this world who would help me if I found a way to get my message through to that person. I just haven’t yet found the way.

Following are a sampling of e-mail responses from some people that I contacted:

August 19, 2008 E-mail from Jerome Groopman, M.D., author of How Doctors Think in response to my request for assistance finding someone to treat my Actinomycosis.

Dear Ms. Gardiner:

This is not my field. I suggest you continue to seek out experts with knowledge with this infection at NIH, Johns Hopkins, etc. Wishes for better health.

Dr. G

March 13, 2008 Email from Microsoft’s Dr. Bill Crounse on behalf of Bill Gates in response to my request for assistance getting my CT scans online for diagnostic grade viewing by radiologists and surgeon physicians who can read radiographs. He never specifically addressed my request. Radiograph CDs typically are in DICOM form, which my computer, run on XP, can’t upload. I offered to give all of my many CT scans, MRIs, x-rays, etc. to Bill Gates and void my rights to privacy if he would help me get them online so that I might find a medical professional who would help me.

Dear Ms. Gardiner:

Thank you for your recent fax sent to Bill Gates at Microsoft. Mr. Gates asked me to personally respond to you. My name is Dr. Bill Crounse. I am a physician who serves as Microsoft’s worldwide health director.

Prior to joining Microsoft, I practiced medicine in the Seattle area for almost 20 years. I am all too familiar with the deficiencies of our broken healthcare system. Most doctors really do try to do the best for their patients, but the system works against them. They also lack the tools they need to manage an increasingly complex array of clinical data. That’s why I decided to spend the rest of my professional career here at Microsoft helping our company and partners develop contemporary IT solutions for the health industry.

Microsoft works more than 600 partners who use our technologies to bring innovative solutions to life. From contemporary medical record solutions, to systems that run America’s hospitals, to patient care portals, to mobile devices for medical professionals, to home monitoring technologies that help people age in place; Microsoft, through our partners, is deeply involved in the healthcare industry.

We also have a Health Solutions Group that is developing or acquiring applications specifically for the healthcare industry. In addition, we are developing solutions such as our HealthVault platform (www.healthvault.com) that directly serve the consumer market. In fact, with a HealthVault account someone like you can upload clinical information and medical images, securely store that information, and share it with whoever needs to see it. Furthermore, a HealthVault account is free.

You can learn more about Microsoft in the healthcare industry by visiting www.microsoft.com/healthcare. I have also authored a number of relevant articles on Microsoft solutions in healthcare at http://www.microsoft.com/industry/healthcare/housecalls.mspx . You will find additional information and discussions about our work in healthcare information technology by visiting my HealthBlog at http://blogs.msdn.com/healthblog

Thank you again for writing. On behalf of Bill Gates and all of us at Microsoft, we wish you the very best.

Bill Crounse, MD

Senior Director, Worldwide Health

Microsoft Corporation

One Microsoft Way

Redmond, Washington 98052-6399

Phone (425) 706-4182

Cell (425) 443-5815

E-mail bcrounse@microsoft.com

Healthcare Industry Blog http://blogs.msdn.com/healthblog/

E-mail from Dr. William Brody, past president of Johns Hopkins Medical Center, in response to my comments on his appearance with the Honorable Michael Bloomberg on Maryland Public Television and to my request for assistance getting treatment. The two dared to publicly broach the premise that a system that legally separates a human patient into parts for diagnosis and treatment just doesn’t work.

From: Brody, William [mailto:wrbrody@jhu.edu]

Sent: Saturday, May 03, 2008 12:58 PM

To: anna.gardiner@verizon.net

Cc: mikebloomberg@mikebloomberg.com

Subject: RE: Healthcare 08 Solutions

Dear Ms. Gardiner,

Thank you for your comprehensive e-mail. You certainly have identified many of the problems of the healthcare system.

I don’t have the time to reply to the many important issues you raise, but suffice it to say that our healthcare system is a patchwork quilt of regulations, incentives (money) and behavior that sometimes results in poor or inappropriate care and high costs.

Thank you for taking the time to write.

Sincerely,

William Brody

September 8, 2008 E-mail from Patient Advocate Foundation in response to my request for help finding treatment for Actinomycosis.

Thank you for contacting Patient Advocate Foundation. Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

If you would like to speak with someone you may call our toll-free number at 1-800-532-5274 to speak with one of our staff. The case manager will need to collect personal information, such as date of diagnosis, insurance information, date of birth, SSN, etc., so please be sure that whoever calls in is prepared to provide that information. We have access to a wide variety of resources and can offer intervention if necessary. We are unable to provide medical advice or assistance with malpractice or coordination of care issues, accidents or injuries, mental health, dental or workers’ compensation claims. Take care

Sincerely,

Patient Services

August 28, 2008 E-mail response from Senator Hillary Rodham Clinton’s office in response to my request for help finding a U.S. doctor who knows anything about Actinomycosis.

Dear Friend:

Thank you for taking the time to share your thoughts and concerns with me via e-mail. I hope you will understand that, because of the volume of e-mails I receive from residents of New York State, I cannot at this time respond to messages received from residents of other states. I encourage you to contact your U.S. senators if you have an issue or concern that needs immediate attention. You can access your senators electronically by visiting http://www.senate.gov/contacting/index_by_state.cfm for a listing of their contact information. If you are still interested in learning more about the work I am doing on behalf of New York State, I hope you will continue to monitor my work through my website at http://clinton.senate.gov.

Sincerely,

Senator Hillary Rodham Clinton

New York State

September 12, 2008 E-mail from Professor Michelle Mello in response to my request for a mediation as an alternative approach to medical injury litigation, which could be funded as a pilot project by the Robert Woods Johnson Foundation as part of its national initiative to test the feasibility of voluntary reform efforts outlined in a 2008 Common Good report.

Dear Ms. Gardiner,

Thank you for your message. I am very sorry to hear of the difficulties you have had. Unfortunately, it would not be feasible to have a health courts pilot to hear your case. A pilot would have to involve a programmatic commitment on the part of a hospital liability insurer and/or a state legislature; it’s not something that could be initiated for one particular case. I hope you are able to find another avenue of relief.

Kind regards,

Michelle Mello

*********************************************************************
MICHELLE M. MELLO, J.D., PH.D.
Professor of Law and Public Health

Department of Health Policy and Management
Harvard School of Public Health
677 Huntington Ave.
Boston, MA 02115
(617) 432-0217 voice
(617) 432-4494 fax
mmello@hsph.harvard.edu
http://www.hsph.harvard.edu/faculty/MichelleMello.html
********************************************************************

September 16, 2008 E-mail from Professor David Studdert in response to my request for assistance exploring an alternative method for resolving a medical malpractice claim. Studdert was involved with the Robert Woods Johnson Foundation’s initiative on “Improving Malpractice Prevention and Compensation Systems” set up to test alternatives to the tort system.

Anna – I’m very sorry to hear about your situation. Unfortunately, there are no current pilot programs for the Health Court up and running. We hope that our research might lead to one or two in years to come. Sincerely, David Studdert

*********************************************************************

David M. Studdert

Professor & Federation Fellow

Faculty of Law & Faculty of Medicine, Dentistry and Health Sciences

University of Melbourne

tel: 61 3 8344 0646

fax: 61 3 9348 1174

mobile: 0407 083 444

email: d.studdert@unimelb.edu.au

November 17, 2008 E-mail from Jim Bona in FDA’s Office of Rare Diseases in response to my request for help finding a U.S. physician who knows about Actinomycosis.

Ms. Gardiner:

Spoke with one of my co-workers here at FDA who suggested you speak with any of the infectious disease physicians named in the Washingtonian Magazine’s Top Doctors for 2008 or 2009 as a place to start to find a highly knowledgeable person. I attached the list from 2005.

http://www.washingtonian.com/articles/health/1919.html

My co-worker did say any of these specialists should be able to diagnose the causative organism as being Actinomyces and to offer suitable therapy. I did see that it is a very rare condition but a good infectious disease doc probably should be able to make the diagnosis. This is just another option for you.

I hope speaking with the NIH program folks is of help.

Please let me know if either of these are of benefit.

Thanks,
Jim

I Want To Be A Vigilante

I want to be a vigilante. More than anything. I tried to keep this blog from becoming an outlet for my rants and raves, but yesterday, after meeting yet again more victims disabled unnecessarily by U.S. Health Care, I’m outraged.

I’m outraged hearing that a person who isn’t outwardly bleeding is made to wait 17 hours in agony in the ER only to be sent home and return two days later with a ruptured appendix.

I’m outraged hearing about a person enduring multiple hospitalizations to no avail until a surgeon overheard physicians discussing the hospitalized patient’s x-rays and upon viewing the radiographs, informed them that the patient needed a gallbladder operation.

I’m outraged that a female colleague had to have her uniformed and armed policeman husband accompany her to a repeat doctor’s visit in order to get the medicine she needed for her epilepsy and migraine headaches.

These are no longer anomalies. They have become commonplace, accepted occurrences in our society. And I’ve seen nothing in any proposed health care reform legislation that will change such accepted behavior that embodies the essence of wasteful spending.

What really got my goat, however, was an article on a respected patient advocate’s website attempting to justify why physicians don’t spend more time reading and analyzing a patient’s test results. The reason she gave was that physicians aren’t paid by the insurance companies to spend time reading and analyzing test results. There’s no code for this, she said.

The article explains that doctors are paid by insurance for every patient they see according to CPT codes, which are developed, maintained and copyrighted by the American Medical Association (AMA). Development and maintenance of these codes and the publication of all the software, books and manuals needed by those who use them brings an estimated $70 million in income to the AMA each year.

The article goes on to explain that the doctor’s compensation is tied to the amount of money the doctor negotiated with the insurance company for each CPT code procedure regardless of the amount of time it takes the doctor to complete. And the logical progression concludes that because there is no code for reading and analyzing test results, the physicians are justified in not spending their time doing such.

I ask, isn’t reading and analyzing test results implicit in being able to derive a diagnosis, which is required for insurance payments?

Is it now acceptable for doctors to simply order tests and not review results? If so, how do they decide which of the many disease/condition codes to circle on the insurance form? Do they throw darts? Is this decided by where the doctor’s finger lands when he closes his eyes and points to the paper?

I assume the physicians’ contracts with the insurance companies has language that refutes this notion.

Yet we, as an enterprising nation with capitalistic ideals, have come to view “follow the money” as an acceptable mantra to justify nearly every health care foible. That’s the way it is. Accept. Forget. Go about your business as usual. It doesn’t concern you. Turn a blind eye.

To me, private enterprise’s ethics sound more like the totalitarian “Big Brother” regime portrayed in George Orwell’s novel, 1984, than any views emanating from our government about health care reform — a government that appears to have gone AWOL when it comes to enforcing regulations.

This is no new revelation. In fact, if you read Holding Health Care Accountable by E. Haavi Morreim, you’ll find that it is a well known and documented fact that the average insured U.S. citizen has less than a 50/50 chance of receiving an accurate diagnosis and proper treatment under our present health care system.

Would you risk your life savings deliberately in Las Vegas with those odds? I think not — at least most of us probably wouldn’t. Yet, without realizing it, based on the status quo, we’re doing so daily not only with our wealth, but also with our lives.

My conscious mind keeps telling me that I’m barking up a tree with no chance of catching the squirrel. Being concerned and speaking out on such matters — even caring — is probably ruining my health even more than it’s already destroyed. I have to admit, the picture of the state of our present health care system gets my blood boiling. But my subconscious tells me something different, and I’m still not convinced getting heated isn’t a good thing given my low body temperature and blood pressure.

The Story #20: The Movie

My saga of attempts to get medical care continues with an adventure in film making.

One blog reader suggested that I pursue getting medical care by contacting medical schools, which, she said, revel in using patients as guinea pigs for its students. I have to admit, the thought had crossed my mind on more than one occasion.

In fact, I started drafting a film based on the notion of re-enacting an “It’s Academic”-style competition that pitted medical students from competing schools against each other. I toyed with the idea of incorporating as team coaches famous TV doctors, like Hugh Laurie as Dr.
House, playing their TV roles in a real life “film” scenario.

Of course, no film would be complete without a romantic interlude. And so the film would start with a flashback scene from 25 years prior with a young med student’s happenstance one night stand with a much younger me. (You didn’t think that I wouldn’t use the film as another chance to try to get medical care, did you?)

The two had met in a Northern Virginia bar featuring a country western band, managed by the med student’s uncle. I was drowning my tears at the bar over lost love, when in walked the tall, thin image of Clint Eastwood as portrayed in “Fistful of Dollars.”

He stared at me the whole night before finally mustering the courage to ask me for the last dance. It was a slow dance, and he was a fine dancer. Holding correct dance position or stance, he pressed me closer. He ended the dance with a long, slow back bending and dizzying embrace. He offered to drive me home as I’d become quite inebriated.

The student was a sophomore in a Michigan college to which he would be returning the next day. That detail had eluded me the night before. I became distraught upon hearing the news because I liked the young man considerably.

The one thing I knew we both had in common was that we had both been riddled with more than our share of illnesses as kids. Illnesses, I learned, that we still had then and that I know I still have today having never been properly diagnosed nor treated by any doctors.

Fast forward to today. Hugh Laurie, as House, is busy filming episodes for next season when he comes across an announcement that Johns Hopkins University Medical School is seeking a coach for the academic team that will be pitted against Georgetown University Medical School’s team in a battle of wits to determine which of the schools has the better diagnosticians. On a dare and as an alumnus, House cannot resist the challenge. So he leaves the crew mid-shoot to become JHU’s team coach.

The storyline leaves ample opportunity for the “House” cast to interject sideline sarcastic remarks about House’s untimely departure in an effort to get him to return to filming.

As JHU’s team coach, Dr. House meets with Georgetown’s team coach (another famous as-yet-to-be-determined TV doctor) who happens to have been the young med student in the film opening scene. The two antagonists inevitably become friends.

In the interim, a half dozen patients with complicated illnesses have been chosen to be publicly diagnosed during the televised competition. I am among the patients.

As things progress, we learn that my illness, actinomycosis, is communicable if sexually transmitted. (This bacterial infection is slowly progressive and often only becomes apparent in mid-life once it has already wreaked much havoc on the body and incited secondary conditions to arise making correct diagnosis a challenge.)

Interspersed among competition questions are flashback scenes from the guinea-pig patients’ doctor visits that reveal the reason for the question and the various influences that can lead to poor patient outcomes.

The Georgetown coach eventually realizes that his long-ago romantic interlude subconsciously affected his treatment of the patient with actinomycosis and that his having contracted the disease explains his own elusive health maladies. He’s given a second opportunity to be a hero, saving my life and his own with Dr. House’s help.

An alternate film scenario replaces the teams of med students with a team of actual doctors pitted against a team of TV doctors known as the “laypeople” team.

Is Health Care Reform The Lesser of Two Poor Choices?

I don’t think anyone knows if government-run or private-run health care is the answer. Both seem to be the lesser of two poor choices for a variety of reasons. Central among the reasons is the lack of focus on patient outcomes (quality of care) and the need to replace the practice of specialists handing off chronically ill patients to other specialists with a team based approach for diagnosis and treatment.

My perspective is colored by my experiences with many doctors working within a privately run, for-profit medical care system — even before there was managed care.

I became disabled under the privately run, for-profit managed care system because the many many doctors I saw in the last decade did not read or analyze my test results. Each assumed either the primary care doctor or another specialist was quarterbacking my care.

I was passed around, referred for repeat tests, and no one was managing or seeing to it that I actually got medical care. When I complained in writing, the doctors and insurance company ignored and dismissed my complaints. I was unable to get anyone to listen to me.

So I gathered my medical records, studied everything medical and self-diagnosed. What I found was that I have what are typically illnesses diagnosed in childhood: actinomycosis and Hirschsprung’s disease. I’ve been sick that long but my immune system was strong enough to get me by..until I turned 50.

My symptoms of not being able to have a bowel movement without laxatives or an enema throughout my lifetime from when I was a baby was caused by Hirschsprung’s disease (a lack of the nerves needed for adequate gastrointestinal motility). I now have a partial obstruction in the ileocecal area (possible appendicitis), sigmoid colon stricture and abnormal colonic mucosa midsigmoid that showed up on two CT-scans and the SBFT series of x-rays. Doctors didn’t know what to make of the abnormalties because they weren’t surgeons, so to save face or out of pride, they ignored findings rather than refer me to a surgeon who can read and understand what was on the radiographs.

The two CT-scans found that my entire colon was stool-filled. All this waste was being recirculated throughout my system, causing bacterial, viral and fungal infection, wreaking havoc with my immune system, causing adrenal overload, hormone imbalance, cardiovascular problems…on and on. I have multiple lab tests positive for everything from H.pylori, clostridia, staph, candida albicans, Epstein Barr virus, HHV6 infection…. All this waste in my circulation caused peripheral vascular disease and arteriosclerosis making it difficult for me to breath, absorb nutrients and get oxygen to the tissues so I can function properly.

Don’t you think one of the dozens of doctors I saw over the years might have taken note enough to diagnose and treat me? None did.

Doctors groaned when I brought them the inch-thick stack of current test results in the hopes that each would not insist on re-ordering his own tests as so many of them did. They told me that they did not have time to read my test result reports. I was too complicated a case for their specialty so they had to refer me on to another doctor, but never to the gastrointestinal surgeon I needed to see who could address the route cause of my illness.

Doctors who could not answer my questions about what the clearly visible ileocecal mass was that the radiologist pointed out in the CT scan report, simply wrote that they saw no gastrointestinal problems rather than risk losing face due to incompetence or lack of knowledge. No one wanted to deal with me, so they didn’t.

So when my money ran out, and the insurance ran out, I applied for Social Security disability using these same reports that my many doctors ignored. With these same test results and independent evaluation, Social Security employed physicians found in record time that I was severely impaired in so many ways. The most blatant result of not being treated for the infections running rampant through my body was the severe degeneration of my spine. I had no problem being awarded Social Security Disability and not one private doctor nor any attorney helped me.

In fact, I have contacted a dozen medical malpractice attorneys but none will take my case because I cannot pay them. Despite advertising to the contrary, all the attorneys I contacted really only want simple accident cases — not cases involving so many doctors, labs, hospitals, insurance companies, etc.

Law is really only a big poker game. Each side keeps upping the ante (cost) with pretrial motions that have nothing to do with me or justice, but with court procedure and rule making. It’s a big, costly game. No attorneys are handling cases like mine pro bono (too costly) or on contingency even when I offered to up their fee to half the award rather than the standard third. For them to take the case, I needed to put up an initial deposit of $20,000, which I don’t have.

I have since learned that attorneys’ reluctance to take on such cases as mine has to do with how convoluted health care law remains. There is no consensus about standard of care, whether the case should be tried in federal or state court, or even who the responsible party is when a patient is harmed due to negligence.

Based upon my readings, I’m surprised any medical entity is ever found guilty of medical malpractice.

I know what is wrong with me, and I know what it will take to get me well as long as disease hasn’t metastasized to cancer. Simple laparoscopic surgery, some penicillin, and other antibiotics, IVs to flush my system of pathogens, and nutrients to rebuild. The rest is up to God.

Recent studies found that spine and brain degeneration injuries previously thought to be permanent have now been found to be curable. The body does heal itself with a little help.

I’ve been doing what I can with vitamins and herbs, cleansers, etc. to try to dissolve whatever is in that ileocecal mass (redundant cecum) since I can’t do surgery on myself. From what I can gather, it appears to be an infected appendix that has grown trying to deal with all the toxins and waste in my system. (I am very nauseous and light headed almost all the time from die-off.)

To me, it is unbelievable that no medical professional will help me or even review my patient records to verify what I am saying. I watch doctors quickly flip through the test results, even new results from tests they themselves recently ordered, and ignore such findings as coccobaccili and heavy growth of e coli indicating enterocolitis… The pages turn so quickly it’s impossible for even the best of speed readers to grasp what is written on the pages.

I’m without funds or medical insurance now. Social Security makes all but select Disability beneficiaries wait 24 months before qualifying for Medicare. I qualify for Medicare this August, just about the time I’ll be homeless due to foreclosure.

Is this a nightmare or what? When doctors keep referring a patient, the patient gets a rap of being a hypochondriac that no one takes seriously. Most people side with the doctors because they assume someone who went to med school and paid all that money for a degree surely must know more than a silly patient who looks like a child.

I’m taking bets on whether I’ll get the same run around with doctors on Medicare or whether a competent doctor will finally refer me to a competent gastrointestinal surgeon or by then, a competent oncologist.

If I was paranoid (which I am not) I would think this was a conspiracy against me, but I’ve seen too many other people in the same boat. We’re all ignored. Many patients just haven’t made the effort to assemble and scrutinize their patient records and research to figure out what all the test results mean.

There is a cause for most disease that is curable if addressed before it metastasizes into cancer.

What I really want to see is enough good hearted, competent doctors get together, acknowledge the repercussions from the system’s limitations, and come up with ways to change for the better. I’m certain that if a group of doctors presented a plan purporting a better way to provide health care to a venture capitalist, those doctors could raise the money they needed to put their idea into action. This could be a prototype that could be expanded if it succeeds.

Obama isn’t proposing doing away with private health care. He just wants to provide people like me an alternative because he knows that government ends up paying — in disability benefits and Medicare — for private health care’s mistakes anyway. I’m proof of that. Why not try to put something into place that might prevent someone like me from having to become disabled in the first place?

At least the Social Security employed doctors read my reports. It only took them one month to figure out what was wrong with me. I’ve been seeing private doctors for 55 years, and they still haven’t figured it out.

I believe isolating each of the specialists is the main problem. The specialists need to talk to each other to understand what’s going on systemically in a patient’s body. The pathogens that cause infection don’t stay in one area. They travel via the lymph, bloodstream, even tissue to other parts of the body and cause secondary problems.

How are doctors expected to diagnose anyone if each is limited to inspecting only one area or one organ? He’s working with blinders on, running to a finish line based upon the narrow view of the road he sees without the benefit of peripheral vision. No wonder there are so many medical mishaps, most of which go unreported.

I’ve always believed in the saying “Do what you love and the money will follow.” I never got rich, but I loved my work and made a comfortable middle class living. Well, it seems doctors aren’t doing what they love if they have to spend so much time chasing insurance money. To me, medicine has become a business about money — not about helping people heal. No wonder everyone is miserable.

In Defense of Healthcare Reform

President Obama could gain more support for his proposed health care reforms if the government actually enforced existing laws.

Under our current system, I believe medical insurance companies have vicarious liability for the negligence of their network providers. Calling the insurance companies to the carpet for the negligence of its providers would expose reasons for the high cost of private for-profit health care and the low quality of care.

I’ve been disabled the last five years because the many providers I saw while insured by CIGNA didn’t have time to read the test result reports. CIGNA rewarded its providers with year end bonuses for having more healthy patients, so my doctors “saw” more patients as healthy regardless of the patients’ actual condition.

On the other hand, using these same records and independent examination, the Social Security Administration’s employed physicians — whom, I suspect, have more time to read and analyze reports — found that I was disabled due to degenerative disc disease caused by untreated infections.

Based on this experience, I assume that I might have a better chance of getting government paid doctors to listen to me and provide the needed care for a few reasons. 1. There might be more accountability for satisfactory patient outcome. 2. Doctors wouldn’t be paid based on the number of patients seen per day, but on the service provided the patients they did see.

Insurers who advertise patients’ rights to be heard in SEC filings shouldn’t get away with dismissing and ignoring member complaints, which is exactly what CIGNA did in my situation. I have written correspondence to CIGNA, my primary care physicians and referred specialists complaining about their failure to take my health concerns seriously. (Since I’ve become disabled while in their care, I think I have a point.)

My blog http://doctorblue.wordpress.com #8 “Search For A New PCP” provides details about my experiences dealing with CIGNA customer care and the numerous, repeated phone calls it took to correct multiple billing errors and to get approvals for CT scans and diagnostic procedures. Surely, insurers should be corporately liable for failure to properly oversee staff and correct quality related problems, and for breach of good faith and fair dealing in failing to provide the insured appropriate care, as well as for breach of fiduciary duty for failure to monitor, investigate and oversee its management system.

Yes, I got my CT scans, MRIs, SBFT, colonoscopy, etc. — all showing abnormalities that the insured’s providers chose to ignore, overlook, downplay…What good are they if no one is there to read and properly analyze the scans to form a proper diagnosis?

The referred specialists made mistakes and the referring doctors chose to side with the specialists without examining the evidence–the reports in my patient records. None of the doctors were receptive to my repeated attempts to convince them to reconsider their decisions. Try finding a medical malpractice attorney to represent the injured party once the patient is broke and disabled.

Perhaps CIGNA is the anomaly among all the other more proficient insurers, but I think not.

If you read my post #19 “Virginia Workers Compensation Claim,” you’ll see that I didn’t get the lifetime medical care and hand surgery I was awarded due to surgeons’ fear of 1) not being paid by the insurer under Workers Comp, and 2) differing opinions on the surgical procedure needed. Aetna was the employer’s insurance company.

We didn’t change civil rights until the courts got involved. We can’t legislate how people feel. But we can adopt laws that protect the rights of harmed individuals. Health care won’t change until the government mandates action through regulation. At least a government-run system would provide an option for obtaining competent medical care, which I don’t have now and didn’t have when I had medical insurance.

Letter to a Patient Advocate

Advocate,

Thank you so much for responding to my e-mail plea so quickly. I saw on the internet that you have another day job and couldn’t help wondering if you had given up patient advocacy because of constraints on your time or the inability of many to pay for advocacy services.

From your bio I saw that you were a registered nurse and a faculty member at a medical school. Your background gave me the impression that you might know the ins and outs of how to find out which surgeons had the best patient outcomes and how to get access to such surgeons. In my travails, I’ve developed great respect for registered nurses as I found they are much more knowledgeable and facilitative than most give them credit for.

My need is very specific. I need to find a competent gastrointestinal surgeon. And that’s it. There’s nothing else.

The only people I know who had successful outcomes finding competent surgeons were those who had a connection (someone working in the medical field). The only way they got an appointment to see a competent surgeon was because this inside connection personally asked the surgeon to meet with the patient. Once the patient met with the surgeon, and the surgeon agreed to do the surgery, then the patient went to his primary doctor to get the insurance-required referral.

The people I know who went through this scenario are very protective of and will not share their “inside” connections. I suppose it has to do with not wanting to overburden and risk losing their contact(s).

Given all of your present obligations, I can see you may not be able to help me, but maybe you know of someone else who would.

I’ve already tried the ways you suggested that I seek competent medical care.

1) I contacted my elected officials or, rather, their “constituent representatives” on both a state and federal level. You can’t get past the guard dogs for a brief meeting with a politician without a big check. I sent written correspondence asking for assistance to State Delegate Adam Ebbin, State Senator Mary Margaret Whipple, U.S. Representative Jim Moran, and U.S. Senator Jim Webb. The bottom line is that politicians don’t intervene in personal matters. Senator Webb’s office did help me with Social Security Administration issues since I became disabled while seeking medical care.

I found the attitude toward chronic illness among political constituent liaisons interesting as well. Suzy Warner, district director for Congressman Moran, said she felt really sorry for me, but that her husband had received great care before he died of cancer, and so she couldn’t relate to my experiences. She said she was surrounded by children, family and friends during her husband’s illness, which comforted her. She said she knows that her husband was left to deal with the trauma of chronic illness alone, but there was nothing she could do for him.

She asked me what illness I had, and looked it up on Wikipedia as we spoke over the phone. Once she saw that actinomycosis is treated with penicillin, she said it didn’t appear I was that bad off and couldn’t believe I would have trouble finding competent care.

Two of Senator Jim Webb’s constituent representatives suggested that I look into government programs like Medicaid, food stamps, and HUD for housing since my home is in foreclosure. When I asked for more specifics about which programs I could apply for, their responses were flippant — too many to be expected to keep track of.

Well, state participation in the federal Medicaid program is voluntary, and Virginia does not offer Medicaid to the disabled — only women during their pregnancies and to children. You have to have no assets and an income of less than $600 per month to qualify for food stamps. The wait list to qualify for HUD sponsored housing is three years long. Fairfax County stopped doing Section 8 vouchers years ago. There are no state programs in Virginia to help the low income or disabled. Don’t you think our politicians should know this? Don’t you think the staff’s “let them eat cake” attitude toward helping the poor is a bit over the top?

Jane Burton in Mary Margaret Whipple’s office suggested I contact the Bar Association to find an attorney so that I can get medical care.

Adam Ebbin’s staff couldn’t get it together to even acknowledge my concern. I got a call stating that my request was received and would be looked into, but no call back. I’m assuming that once it was deemed a personal matter, my letter was trashed.

Written comments submitted to federal legislative aides concerning my experiences and the need for health care reform landed in the abyss. Blog discussions on WAMU’s The Conversation revealed that my experiences contacting my elected representatives was not uncommon. Others wrote that their opinions and suggestions were also seemingly ignored.

2) Health Care Blogs. I signed up and participated in a half dozen. Great for moral support. The need for competent medical care is rampant. Very unhelpful for someone with a rarely diagnosed illness like actinomycosis, for which there is not even a support group. NORD, the national organization for rare diseases, didn’t even have the disease listed. I get lots of general suggestions to seek out clinical trials, or to contact any infectious diseases specialist who “ought to” be familiar with…

You need a physician’s referral for clinical trials, and I couldn’t get my doctors past a diagnosis of high anxiety. Then again, what would a clinical trial for actinomycosis be trying to achieve? Proving the efficacy of penicillin? Trial surgery to remove an infectious mass?

My experiences with doctors in which I name names and reveal my medical history are detailed on my various blog entries. The doctor visits are ludicrous. I need to include an entry on the “10 Dumbest Things Doctors Told Me.” Things like, “You’re about 50 now. Just wait a few months. It’ll all go away. You can wait that long, can’t you?” The list is long.

Infectious diseases doctors I saw don’t even believe that esophageal or gastrointestinal yeast infections exist even though Merck and other pharmaceutical companies charge exorbitant prices for their newer IV antifungals like Cancidas, which were developed specifically to treat gastrointestinal fungal infections. The infectious diseases doctors I saw believe that fungal infections only occur cutaneously on the skin of HIV and cancer patients, in women’s vaginas and as harmless oral thrush that everyone has so there is no need to treat.

3) Seeking Publicity. My attempts without knowing someone specifically at the station or newspaper fell flat. I submitted my story to Discovery’s “Mystery Diagnosis.” It was rejected because I don’t have a happy ending. There’s no resolution. Discovery gets thousands upon thousands of stories from people just like me seeking competent care to no avail. It’s an old story no one wants to hear without a happy ending. It’s too depressing otherwise.

I could put more effort into getting my story publicized, but my energy is very limited. Since I get Medicare in August, I thought it might be more productive to try to find a surgeon and schedule surgery. I could still seek to publicize my story after recovery and might have more interest in a story with a positive outcome.

4) One last example about the difficulty in getting medical help with an infectious diseases doctor at Johns Hopkins.

I heard Jonathan Weiner, Johns Hopkins University professor of health policy and management, on The Diane Rehm Show. So I contacted him for assistance. (When Diane Rehm had difficulty locating a physician knowledgeable about spasmodic dysphonia, she went to Johns Hopkins without a referral and was diagnosed within one hour by a JHU physician, who treated her at the same visit.)

Prof. Weiner suggested that I make an appointment with JHU’s Infectious Diseases Division physicians. He even had the admin assistant call me to set up the appointment. Wow. But when I didn’t have a doctor referral stating the diagnosis already, she refused to make the appointment. She said that it was JHU policy that all patients must have a doctor’s referral to be seen, and the referral must state the diagnosis or reason for the referral so that JHU physicians will know upfront if they will be able to help the patient.

When I repeated this unbelievable response to Prof. Weiner, who, mind you, is in charge of JHU health policy and management, he said he, too, could not believe that a JHU physician would not see me for an initial consult because I did not have a doctor’s referral. Keep in mind, everyone acknowledged I did not have medical insurance coverage and that I would be paying cash for the office visit. Professor Weiner suggested that I file a complaint with JHU Patient Relations (the patient advocacy group). I did.

To cut to the chase, on January 13, 2009, I received the following written response to Patient Complaint #12610 from Paul G. Auwaerter, MD, Clinical Director, Division of Infectious Diseases, Johns Hopkins University:

“Dear Ms. Gardiner: I have been notified through the JHMS Patient Relations of your complaint regarding some telephone calls in order to set up an appointment in our Division of Infectious Diseases. As you were appropriately told, we ask that patients be referred by their physician with a specific question. Since we have limited faculty and limited appointment times, this is how we can best determine how to help the patients most in need.”

I want to add that when I was trying to set up the appointment I faxed over a pathology report showing actinomycotic granules, lab tests positive for bacterial infection, and CT scan results demonstrating the features seen in patients with actinomycosis in order to prove to JHU doctors that I had actinomycosis. They said the tests weren’t current enough and would have to be redone as if some miracle had occurred between then and now.

In sum, while all the advice I’ve read about empowering patients to take control of their medical care is right on, I found the practical application of such advice intangible. The advice seems to be written for a people and a place as things “ought to be” and not as they are. We’re dealing with less than perfect human beings who have chosen to “follow the money.” Doctors lost sight of the fact that patients pay the insurance companies who pay them, so it is ultimately the patient whom doctors should be working for — not the insurance companies.

This focus on appeasing the insurance companies to get paid seems to have warped doctors’ (and others’) view of what they do. Insurance companies who reward doctors for having more “healthy” patients encourage doctors to report and see more “healthy” patients regardless of the patients’ actual condition. It takes less time to see “healthy” patients, and we all know doctors are paid based upon the number of patients they can see in a day. On my own, I’m fighting a Goliath. That’s why I need your help or help from someone like you. I need someone who can get me an appointment with a competent gastrointestinal surgeon.

Very respectfully yours,

“Doctorblue”

You Write This Story’s Ending

Some readers want to know what happened as if this was an episode of the Discovery Channel’s “Mystery Diagnosis.” Was my self diagnosis accurate? Did I have the surgery and was it successful? Did I discover the cure for what is ailing me? But my story didn’t qualify for the TV show because there is no happy ending. That’s the problem with real life. It’s not like the movies.

So who’s stopping you from making it so?

In “John Q,” a 2002 film starring Denzel Washington, a down-on-his-luck father, whose insurance won’t cover his son’s heart transplant, takes a hospital’s emergency room hostage until the doctors agree to perform the operation. The movie might have been too depressing if, coincidentally, a woman killed in a car crash hadn’t happened to be an organ donor with a matching blood type…and a TV news crew hadn’t broadcast video of a heart wrenching phone conversation between father and son that touched the hospital administrator enough to put the son’s name on a transplant recipient list…

My story is more like a Mr. Bill saga. Mr. Bill is the little Play-Doh doll that became one of Saturday Night Live’s most popular characters. In every clip, Mr. Bill’s nemesis, Mr. Sluggo, dismembers and smashes Mr. Bill with the help of the evil Mr. Hands as Mr. Bill resounds his notorious refrain, “Ohh Nooo!!!”

My story, chronologically portrayed in blogs from #1 on, doggedly continues with Mr. Bill as the dismissed, forgotten patient, now disabled with severe bone degeneration and barely functioning after five years of searching for competent health care. In my story, if I die, doctors get away with manslaughter, and society doesn’t even blink.

My story is not unlike that of many other Americans whose doctors failed them. You just don’t hear about these people because most have families to care for them.

If I sound angry or bitter, well, maybe I am. Is it fair for me to be mad? And if so, at whom should I be mad?

When the credit crisis hit, it became apparent that nobody was even trying to restrain investors. Well, when the health care system here implodes, it, too, will become apparent that nobody dared stop the runaway money train we call U.S. health care.

We let doctors keep busy ordering tests and shuffling patients among all the different specialists and labs, when all the while no one was doing the math — adding 2+2 — to examine whether their actions were necessary, or even warranted, based on the particular patient’s circumstances and condition. Is all this testing and shuffling really necessary to diagnose and treat a patient? Or is the real reason for needing all of this to deliberately blur the role of primary diagnostician to make medical malpractice suits too complicated and costly for most patients to pursue?

Tell me, how many doctors does it take to diagnose a systemic bacterial infection? How many tests showing positive signs for inflammation and infection do doctors need to discern bacterial infection? Is it really necessary to order tests of substances from every orifice, get a biopsy and CT scans to determine a patient has an infection? Apparently, it is.

Or is penicillin not a sexy enough drug to prescribe? Are doctors afraid they won’t look smart and hip enough if they prescribe this antibiotic since none of the pharmaceutical reps are hyping it? Does the reliable affordable standard pale in comparison to all the super expensive new drugs being hawked? Do doctors intentionally prolong a patient’s illness with continued testing before prescribing any treatment in the hopes of eventually finding cancer where the selection of treatments is more varied and interesting? It seems so.

As you’ll see if you read my blogs, I wasted a lot of time and money while I still had medical insurance with doctors who were either incompetent or just stopped caring about their patients. I was caught up in a maddening scenario of being really ill, being told I wasn’t that ill and refusing to believe that not one of the dozens of doctors I saw was going to help me get better.

I didn’t figure out what I had until after I’d run out of money and insurance and stopped seeing doctors. (None of my doctors diagnosed nor treated me despite the wealth of positive test results.) It took me another year to find a doctor who knew anything about actinomycosis (an invasive bacterial infection), so that I could get a prescription for penicillin. Usually the disease is treated in-hospital with intravenous penicillin for three weeks and accompanying surgery before the patient is prescribed oral penicillin for the next 6-12 months. Not having money nor insurance now, oral penicillin will have to do.

Actinomycosis is slowly progressive and developed to its severe state over my lifetime. It explains the many unrelenting earaches I had as a child and chronic problems with my teeth and tonsils. Undetected, this common childhood illness manifests as a much more debilitating illness in the adult’s middle years, when the organs and immune system are no longer functioning up to par. When the infection isn’t detected, it spreads to the skin, vertebral bodies, brain, liver, kidneys, lungs, intestines and pelvic organs.

I need surgery to address infection in my cecum and appendix as well as in the sigmoid colon. My doctors didn’t know what to make of the CT scan showing a mass in the ileocecal region, even though it’s known that most actinomycotic abdominal lesions occur there and cause partial intestinal obstruction. They chalked up my back pain and persistent lower abdominal pain to gas and did nothing. My big worry is that, left untreated, such growths may stimulate the onset of malignant cancer.

I am still looking for a competent gastrointestinal surgeon who knows about actinomycosis as well as chronic intestinal pseudo-obstruction among other GI disorders. It’s unknown whether the abnormal mid-sigmoid colonic mucosa photographed and documented during a colonoscopy in 2005 is cancerous because biopsies were taken from the descending colon instead — a repercussion of doing repetitive, assembly line procedures. The focus shifts from the patient to getting through all the procedures timely.

Yet despite the numerous Mr. Bill-type encounters I’ve had with doctors, I continue to pick myself up, put on my Pollyanna face and persist in believing I will find that one knowledgeable, empathetic doctor, only to have my spirits dashed again.

I got too depressed to keep writing about my experiences for now. I figured if I put some distance between my experiences and what I think about, the experiences will eventually appear to be more comical than tragic. What do you think?

It scares me a great deal to know that most physicians, even surgeons, don’t have a clue about so many illnesses. Many doctors justify ignoring illness by claiming that because so many people have the same condition, the illness is “normal,” and therefore, there is no need for treatment. That means if we all get swine flu or ebola, we’re still all healthy.

If you ask me, isn’t there a matter of degree of infestation or overgrowth that ought to be investigated here? I mean, the progression of logic for their argument would indicate that only organisms from outer space cause disease. Following their logic would mean outbreaks, epidemics and pandemics were all “normal.” The more, the merrier.

What I don’t need is an unknowledgeable surgeon doing exploratory surgery without any understanding of the diseases he’s confronting. With problems on both ends of my large intestine, it’s quite possible that I’d wake up after surgery with no large intestine. Who knows what else might be missing or left behind?

If you think my concern is a bit over the top, consider that while none of my doctors felt I was ill, or ill enough to be concerned about, the U.S. Social Security Administration deemed me to be permanently disabled.

Last fall, I applied for and was awarded Social Security Disability within three months — the shortest time frame practical by law given that the patient’s doctors have a month to respond to SSA’s inquiry. No non-SSA doctor nor attorney helped me with the claim. Many applicants aren’t awarded disability benefits until after they appeal their first denial.

I found that many people are under the impression that once you get Disability, you qualify for Medicare coverage. Not so fast. SSDI beneficiaries are eligible for Medicare coverage only after 24 months of being deemed eligible for disability benefits. I qualify August 2009.

I suppose legislators assumed state-run Medicaid programs would cover uninsured recipients in the interim. Even though the media reports and everyone thinks Medicaid is federally mandated for children and the disabled, not all states offer Medicaid to the disabled. Virginia, for instance, only offers Medicaid coverage to women during their pregnancy and to children.

So when I go out there now, again believing that the next doctor I see will begin a treatment regime so I can get on the road to recovery, only to find that I must first endure the costly battery of updated tests to prove to this doctor that a miracle hadn’t occurred since my last battery of tests, I am watching my meager disability stipend — my only source of income — wither unnecessarily. I’m paying this doctor with the same funds I need to use to secure new living arrangements, food, etc.

My attempt to explain my dire financial situation to the doctor is typically met with disbelief. Surely, there are assets and savings! Since becoming disabled, I paid my bills from the proceeds of sold assets. When I ran out of assets, I stopped paying creditors. But for these doctors, it’s infeasible that my savings and assets were exhausted after five years of not working — paying for living expenses and medical help that was never delivered. It’s as if the doctor and I are living in two separate worlds, and neither can fathom what it’s like for the other.

At each succeeding office visit, I endured an explanation of the rationale that all the tests were needed to justify to the medical insurance carrier…What medical insurance carrier? What part of “self pay” was not understood or believed? But the larger question that must be asked is: “Whom is the doctor working for?” The patient or the medical insurance company?

I am hoping to have identified a competent surgeon and to have shored up stable living arrangements by this fall. I’m in the process of losing my current home. Surgery will have to wait until after I find somewhere to live as I don’t want to end up being homeless with a colostomy bag or incoherent on pain meds.

As you can see, the story’s ending has yet to unfold. And that’s where you come in. Tell me how you see the story ending, and then make it so.

Tell me you believe you have the power to change this story’s ending. Not for me, but for yourselves. Why should you care? Well if it happened to me, it can happen to you — as unlikely as that seems in the moment. Do you really think you will escape the mistakes inherent in our broken health care system?

My problem all along — and the main thrust of this blog — is that I can’t find a doctor with the needed knowledge or will to help me. You can help by simply helping me find that doctor, who is most likely, a surgeon — someone who can read radiographs and who is willing to consult medical experts on conditions not typically encountered.

You can help me find somewhere to live. It’s not easy qualifying for any type of living quarters once your credit is shot even if you offer to pay several months of security upfront.

You can help by finding me pro bono legal counsel — someone who believes in the values upon which our nation was founded.

You can help by turning this story into a movie or episode on “Mystery Diagnosis” so that others might recognize how blatant doctors’ errors have become and change things.

You have a choice — to do something or to do nothing. Your actions will affect the outcome of this story and your own life. I never imagined I would be in this position. I’ve been independent and self reliant most of my life. It’s one thing to ask friends for help when you’re healthy. It’s another thing to ask for help when you’re sick with no idea of when or if you’ll get better. Well, I’m asking. If you believe in karma or the axiom, “What goes around, comes around,” you’ll know it’s the right thing to do.

What I Know About Health Care Politics

I’m pre-empting my continuing saga on efforts to secure legal counsel with this blog in honor of President Barack Obama’s conference on health care today. If NPR’s Morning Edition is accurate in its portrayal of events, this will be among the first meetings on health care that begins with a discussion on the ways health care delivery or quality of care needs to change in order to lower costs. Personally, I’d like to hear what suggestions practicing doctors have on the subject.

In re-reading yesterday’s blog post on my workers compensation suit against U.S. Health, it was clear to me that addressing how doctors are paid is key to improving patients’ quality of care. The current payment system rewards doctors for seeing lots of patients for short periods rather than for achieving results or helping patients actually get well. The insurance bonus programs designed to reward doctors for having healthy patients only encourages doctors not to take on chronically ill patients and to overlook illness in patients who really need health care.

Patients need to be empowered and brought into the “system” as active participants. This paradigm shift from the deist doctor who dictates patient care protocol in a “my way or the highway” manner will be difficult for many doctors to accept or employ. Such change will likely necessitate doctors hiring patient care coordinators who meet with patients to summarize their questions and concerns so that they may be addressed cost effectively with the physician.

For patients with multiple health issues who are seeing various doctors, the office care coordinator would be tasked with communicating with all of the patient’s doctors to make sure all care providers are versed on the patient’s care and progress. Implemented effectively, such coordination among care providers should facilitate proper diagnosis of the underlying cause of illness and prevent treating only secondary conditions that occur as a result of the undiagnosed, untreated underlying condition.

The position of care coordinator would be analogous to that of a project manager, who ensures that jobs are completed timely and within budget by keeping abreast of progress and troubleshooting glitches.

A rating system should be established so that patients can easily assess the services offered in different practices. Can patients book extra time with the doctor? Will the doctor be open to discussing procedure options? Will the doctor return phone calls from patients with a question or must the patient speak through his assistants? If a patient finds his medical record contains misunderstood or incorrect information, can the information be corrected? If so, what is the procedure?

The intent is to shift the focus to patient care and away from what the doctor needs to do to get paid.

I was quite inspired by U.S. Senator Ted Kennedy’s heartfelt promotion of health care for all in his speech at the Democratic National Convention last year. Still I can’t quite reconcile in my mind the dichotomy between what politicians espouse and the inequities that I find existing within established government health care programs. Take Medicare eligibility for the disabled, for example.

Those found to be disabled by the Social Security Administration are eligible for Medicare coverage after 24 months from the date the person became eligible for SSDI benefits with a few exceptions. Disabled persons requiring kidney dialysis or with ALS and a few other conditions are immediately eligible for Medicare coverage. I ask, where’s the equality in providing health care coverage through Medicare only for those with these certain illnesses?

I am disabled — not because insurance refused to pay or because of a botched procedure, but because my spine and central nervous system severely degenerated due to doctors’ failure to diagnose and treat the infections that were caused by my undiagnosed and untreated Hirschsprung’s disease. The sooner I can get access to real medical care, the greater the chance there is for me to get well enough to go back to work and become a productive, tax paying member of society again.

How hypocritical is it that our government sees fit to only allow those with certain disabling illnesses to access medical care immediately upon being awarded disability benefits? Multiplied by the thousands affected, have our legislators chosen to sacrifice tomorrow’s future to save pennies today?

Those who suggest seeking medical care at the few low cost health clinics in this area are obviously uninformed about chronic illness. Any health clinic official will tell you that such clinics are not equipped or intended to address chronic or complicated illnesses. In fact, under our current health care system, it seems no doctor is set up to address chronic illness. ER doctors complain that too often internists have resorted to sending their non-emergency patients to the ER for medical work ups rather than conduct the necessary tests and take the time to diagnose their patients’ illnesses on their own.

When I approached my elected representatives about the dilemma, I couldn’t get beyond their staff, who suggested I hire an attorney or just couldn’t relate. In Virginia, you need a doctor’s backing to file a malpractice suit. I think that’s unconstitutional. Why should I need a “treating” doctor’s testimony when I have test results to prove my case? Even the Social Security Administration realized that many doctors refuse to participate in their patients’ disability applications and so will arrange for some patients to see assigned SSA-paid doctors to help with the disability determination.

I’m hopeful and fearful about our new Congress’s ability to move beyond its self patronizing environment and start addressing topics until now considered too risqué to tackle publicly — like what are we getting for our health care dollars.

With so many conceding that our health care system is broken, I can’t understand why politicians have refused to address the quality of health care. The focus has all been on funding. My insurance paid for the majority of my tests. Doctors, on the other hand, went on strike and didn’t tell anyone so they could keep collecting fees.

Consumer laws protect us from shady contractors who don’t perform per their contracts. Why is it okay for doctors to get paid for simply trying to help a patient? Who decides how hard they have to try? Contrary to HMO policy, my internists relinquished care to the specialists they referred rather than act as care coordinators per their contracts with the insurer.

The focus of nearly all the doctors I saw was on how to finagle the diagnosis to the insurer to expedite payment rather than on patient care. I found there was a pattern among doctors, in general, to downplay a patient’s condition to the insurer to expedite payment. At first, this didn’t faze me. But then, the doctors forgot what the real diagnosis was, hence making it impossible for me to get the care I needed. If doctors persist in massaging their diagnoses as they’re taught to in classes held on how to expedite insurance payments, they should at least keep two sets of books to separate reality from fiction.

Under our current money focused system, our medical community is playing Russian roulette with an aging population. It’s causing people, like me, to become disabled unnecessarily. Refuse to change and just watch our nation’s social security fund being drained at a much faster rate by the increased numbers applying for disability because no one would address the impaired quality of care largely caused by our health payment system.

Outpatient care should be designed around a center in which internists and various specialists work together to come up with a comprehensive diagnosis. All would know how to read radiographs and be required to consult each other and come up with a comprehensive diagnosis before the first prescription was written. Liability for patient welfare would rest equally on the shoulders of each member of the diagnosing team, thereby creating an internal peer review check to reduce errors.

This would prevent a patient who started taking medication prescribed by one doctor from skewing test results ordered by the next specialist, seen weeks later. This would lead to faster and more accurate diagnoses since specialists are trained to only look for disease within their respective fields. Using the combined knowledge of all specialists upfront would drastically reduce the number of specialists who unsuccessfully treat a patient’s secondary symptoms while the root cause of disease goes unaddressed. This would mean less administrative paperwork, less test duplication, less wasted gas driving to all the different specialists’ offices and testing facilities and would drastically reduce the overall cost of health care. This would lead to greater patient health outcome and satisfaction.

The last few years trying to be heard or get help, I contacted all kinds of folks and tried all kinds of things to get through. I kept getting kicked downstairs to the admin or staff more concerned with protecting their realm than with truly assisting anyone with anything. It’s quite a statement about human nature.

When you get that many no’s, you begin to start wondering what it is about yourself or your approach that turns people off. Then you look around at the rooms full of people in the same boat, and you realize no approach can affect change if the recipient lacks the knowledge or experience required for you to get through. You feel like you’re Al Gore trying to get across the concept of global warming. You wonder if you have the same quality that enabled him to persevere. Then you think of the alternative — give up, die.

How loudly can someone yell H E L P!!! and still be ignored? All the while, you feel the cognitive dysfunction from your illness increase. You think you might wake up one day too alzheimerish to remember enough to care. That’s why I had to write down my experiences with outpatient care doctors and the medical community before I forgot. The stories are compelling and shed light on the chasm between medical research and the practice of medicine that hasn’t altered its robotic, deistic ways in over 30 years despite mind blowing advances.