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”

~ by doctorblue on May 2, 2009.