Dec 26, 2008
Hello - I have two very important questions that I would like answered if you please can.
1) I had an HIV specialist that would make appointments to get my blood drawn and to see her every 3 months. I recently moved and have a new HIV Specialist. He advised me that he only orders labs every 6 months on patients who are under good control of their HIV. I know that it's only 3 months longer than I was used to, but I don't feel comfertable with this setup. I was wondering if I'm unnecessarily worrying and if their is a "standard". Should I find another physician? I'm undetectable and viral load is around 500.
2) On the flip side, my partner is going through the Ryan White program in Houston. His Viral Load is around 12,000 and t-cell is 170, 19%. (tcell has dropped from 200, 3 months ago). The doctor he is seeing keeps asking him to wait to start meds because according to the doctor, his percentage is still good. I'm not a doctor, but I do not agree. I think he needs to go on meds as soon as possible. I asked my partner to press the issue to get started on meds, which he did, but the clinic is moving terribly slow to get him approved. The social worker could not get the paperwork done in time, and asked the doctor if she needed to fund meds from the clinic until the drug assistance program kicks in. The doctor said no, that he could wait. My partner has been waiting 4 weeks and still has not received a solution to his med dillema. I'm getting concerned his health is going to deteriorate. What can I/we do and what is your perception on his state of health with the information I provided?
I know you are always slammed with emails, but I appreciate your consideration to answer this one.
Response from Dr. Frascino
1. Because of the availability of the newer, more potent antiretrovirals coupled with the fact that many (although not all) folks seem to be doing quite well on fully suppressive regimens (combination antiretroviral drugs that drive the HIV plasma viral load to undetectable limits), some HIV specialists are expanding the routine every-three-month monitoring of CD4 counts and viral loads to every four and, in some cases, every six months. Personally, I feel more comfortable with the every-three-to-four month, rather than every-six-month, interval. Since these newer drugs are indeed "newer," I feel it's important to monitor for unanticipated toxicities (bone problems, etc.) and/or side effects. When D4T was first introduced, everyone felt it was a very well tolerated medication with few side effects. The association with lipoatrophy was not recognized for quite some time. There is no doubt antiretrovirals are potent and, in some cases, novel new agents. When dealing with integrase inhibitors, CCR5 antagonists and fusion inhibitors, etc., I personally don't feel comfortable waiting a full six months between visits. I can't say that your HIV specialist is doing anything wrong. It's just not what I would feel comfortable with from either side of the examination table (person living with HIV or HIV specialist physician).
2. I would definitely agree with you. Anyone with a CD4 count of 170 should begin antiretroviral therapy immediately. They should also be on prophylaxis for PCP (Pneumocystis carinii pneumonia). If indeed your partner's HIV specialist is advising him he does not need or does not immediately qualify for antiretroviral therapy, your partner should find another more competent HIV physician specialist! That the social worker can't get the paperwork done in a timely fashion or that your partner's HIV physician is not immediately recommending he begin treatment is another shameful example of substandard medical care. This should not be tolerated. Demand a second opinion and contact your local AIDS service organizations for additional assistance in getting this issue resolved expeditiously.
(Doesn't Houston have an airport named after Bush? Perhaps that explains some of the screw-up?)
Good luck to you both.
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