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Can My Doctor Refuse Treating My HIV

Oct 4, 2013

I'm a hetero married HIV+ patient and a Pulmonary Hypertension patient. However when I was diagnosed with HIV I began seeing an Infectious Disease doctor to begin treatment of my HIV. My wife is HIV- and she goes with me to all my doctors appointments. We have been seeing the Infectious Disease doctor for a little over a year as my Pulmonary Hypertension doctor referred me to this Infectious Disease doctor who practiced in the same office. On My first visit the doctor talked about HIV and possible treatment options and sent me for labs so she could get a CD4 count and genotype workup. During the visit the doctor informed us about adherence and we said we understood due to the fact that adherence to Pulmonary Hypertension medicine is just as important as adherence to HIV treatment. And we talked about starting treatment as soon as the genotype workups came back. However every time me and my wife visited with the doctor the doctor always stated the importance of adherence and constantly refused to prescribe treatment until we could prove that we would adhere to treatment regardless of how much both me and my wife told the doctor that we have never missed a dose of the pulmonary hypertension meds so we didn't see any problem with adhering to HIV treatment. None the less my doctor still refused to prescribe HIV meds. And since both me and my wife didn't know much about HIV and for the fact that we trusted the Pulmonary Hypertension doctor that referred us to the Infectious Disease doctor we didn't think much of it and we kept telling ourselves that she would prescribe on the next visit which never happened. After a little over a year later and several visits to this doctor I was told that I was now in AIDS status as my CD4 count was 76 and my viral load was 1,046,200 copies. This floored both me and my wife as we were anticipating treatment way before that happened as we started seeing the doctor a little over a year already. However during this visit the doctor told the patient and his wife that he would be dead in 6 months and told me not to come back not to mention once again the doctor still refused to prescribe HIV treatment saying I haven't proven that I would adhere to the meds. Being that both me and my wife were shocked and frightened we didn't know what to say so we left the doctors office and went home. However the next day I did call the doctors office and threaten to sue due to the fact that the doctor said not to come back which caused her to break the patient physician relationship which is fiduciary. After I called the doctors office and left a message with the receptionist the doctor called me back and agreed to see me again. I had another visit a few weeks later. Once again the doctor still refused to prescribe HIV treatment even though I had a CD4 of 76 and a viral load of over 1 million copies. The doctor discontinued care and sent me to ADAP due to no insurance however the doctor was aware of this from the very first visit I had with her as my Medicare had not kicked in yet. However me and my wife had contacted several of the HIV medicine manufacturers and found that a majority of them had patient assistance programs that would cover all or part of the cost for patients who had no insurance and were already working with the manufacturers of Truvada and Isentress to get them for free. The doctor was aware of this fact but still refused to prescribe saying once again that we wouldn't adhere to the meds due to the lack of insurance even though my medicare was going to begin in just a few short months but had arrangements to be on the patient assistance program for both drugs until my medicare started. I have been on treatment for a little over a year now and my CD4 has gone up and my viral load is now undetectable and I've never missed a single dose of my HIV treatment with Truvada and Isentress which is the same prescription I started with and I'm still currently taking. However from the time I began treatment till just recently I haven't left my house for anything literally due to the fact I was afraid of getting a cold and dying due to the doctor telling me I would die in 6 months and for the fact that I have been in and out of hospitals since starting treatment due to chest colds and not getting to do the fun things me and my wife used to do did put a strain on the relationship for some time but thankfully things are back to normal but during that time it was extremely scary for the both of us. So my question is was my doctor allowed to discontinue care so abruptly without proper notice and while my CD4 took a dramatic drop and was she allowed to refuse treating my HIV.


Response from Dr. Young

Hello Nathan and thanks for posting.

Sounds like you've had challenges in communication with your care providers- yes, with that very low CD4 and viral load it was indeed time to start medications. Indeed, HIV medications are now recommended for all persons living with HIV who are willing to be adherent to pills and care schedules.

As for your fears- it's perfectly ok to leave the house. You're on good medications, have an undetectable viral load and rising CD4. You shouldn't be at significantly greater risk of infections or chest colds, especially if your CD4 count is above 200.

As for interruption of medications, this is usually not a preferred approach, but supply issues (insurance, copays, stock-outs) can sometimes cause this to happen. In your case, it appears to me that there are communication and understanding issues that need to be sorted. Uninsured people can certainly be adherent to medications, so that's not an issue that would prevent treatment, and the fact that you had a patient assistance program coverage is an excellent bridge to the new insurance.

I'd suggest readdressing your concerns with your doctor, and if needed, involving a case manager or peer advocate. In the worse case, you might consider speaking to an alternate care provider or second opinion.

I hope that helps, BY

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