|Feedback - no need to reply
Jan 29, 2009
No need to reply to this message, but I just wanted to give you some great feedback.
I've used this forum to ask you a few questions over the years. Most recently it was relating to how often I see my doctor, and also the issue I was having with my partner in Houston-area Ryan White funded clinics... Each time you've always provided such helpful advice and even have made me feel better in my dark times. I just wanted to thank you not only for the service you provide to others, but for the assistance you provided me. I don't know if you take any patients in your practice, but if I lived in San Francisco, I'd feel priveledged to be one of your patients.
In my most recent issues, my partner was able to find another Ryan White funded clinic that provided great care. It was amazing the night and day difference between doctors. It's sad to think that some HIV "specialists" are providing such horrible "care" to their patients. With the new doctor, my partner got placed on medications right away and is scheduled for a future blood test to check how he's progressing.
On my question as to how often I see my doctor, I did some asking around and found that when I told the name of my new HIV specialist, everyone made a disapproving face. That was enough for me to finally switch doctors. I found a recommended doctor in a Houston HIV Yahoo! groups, which I will see next week.
In any case... my point is that I wanted show my appreciation. I don't know if you get many responses for all the people who's lives you touch.
-=-Oscar-=- (I signed -=-O-=- in previous messages to you)
Response from Dr. Frascino
Thanks for your kind comments and the cyber-hugs! Both are warmly appreciated. I'm delighted by the news that you and your partner now have located more compassionate and competent HIV care! Be sure to advise your local AIDS service organizations regarding the inadequate care you and your partner experienced. Hopefully they will help steer other new patients away from these guys. You can also post your experience on the Houston HIV Yahoo site. In other words, get the word out so that others won't have to endure the same incompetence.
Good luck and good health to both you and your partner. I'm here if you need me, OK?
Continuation of Houston HIV care... Jan 2, 2009
As a recap, I wrote to you last week about my partner who has a tcell count of 170, 19%, and 12,000 VL as of a month ago. We live in Houston, TX and he's receiving care through a central clinic in Houston for the Ryan White program. The doctor is dragging his feet saying he can wait to receive treatment.
I'm writing you again because my partner and I are at a loss and don't know where to turn. After calling and leaving messages to which we got no call backs, we took your response that you wrote me about how it's generally recommended he'd be placed on treatment straight to the clinic in person. The doctor told my partner that he's worrying unnecessarily. That the doctor has seen people go into his office with a tcell of 5, and given my partner's tcell count of 170, it is really generous. He went on to say that the Bactrim (antibiotic) he is on will protect him from any illnesses he might get dyring this time. My partner pushed the issue and asked if he could receive meds through the clinic until the Drug Assistance Program approved his application. The doctor said he'd go back to his office to see what he had available, and instead sent out the social worker who said my partner is worrying too much. It's like they're completely avoiding our concern!! The social worker went on to say that the state has stalled on his application because the copy of his picture ID was not clear. Why they didn't call us earlier to let us know, I don't know!!!
In the end, they turned him away for medications from the clinic citing that he's worrying too much and that he can wait for State approval. The ETA on approval from the State and Financial Aid is about 2 weeks.
Is there anything else we can do? If my partner had medical insurance, I'd tell him to find another doctor, but we're stuck with this buffoon of a doctor and public aid health system. :(
Response from Dr. Frascino
Your partner's physician is being disingenuous. Either that or he really is a "buffoon," as you mention.
The facts are:
1. A CD4 cell count of 170 signifies significant immunodeficiency. A count less than 200 qualifies for an AIDS diagnosis. All published guidelines recommend antiretroviral therapy be started immediately when the CD4 count falls to this level. That the doctor has seen patients walk into his office with CD4 counts of five is completely irrelevant.
2. Bactrim is used as prophylaxis against some opportunistic infections, particularly Pneumocystis carinii pneumonia, in patients with severe immunodeficiency (CD4 counts under 200). It does not treat the underlying problem of HIV infection. For that antiretrovirals, not antibiotics, are needed.
Because HIV/AIDS generally progresses slowly, a two-week wait to being antiretroviral drugs may not cause irreparable harm. However, that does not excuse the unnecessary delay. Nor does it excuse the attitude, misinformation and substandard care your partner has received. I would encourage you to contact your local AIDS service organizations. This can't be the only HIV specialist in the entire Houston public health system. Your partner deserves more competent and compassionate care. Have you guys ever considered relocating to San Francisco? Kidding aside, I would make every effort to get away from "Dr. No" ASAP.
Weird Houston... 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.
Please help, v. scared and have been trying to find answers for three months! (I'm sorry to keep asking, but I don't know who else to ask)
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