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April 2009 Podcast -- 2009 Update on Body Shape Changes and HIV/AIDS: A Conversation With Dr. Donald Kotler and Patient Activist Nelson Vergel -- By Bonnie Goldman

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Nelson Vergel: That brings me to the next question. If you had all the money in the world, what would be your main research project, when it comes to the area of body shape disorders in HIV?

I'm interested in your view since you both see patients and do research -- which is a good thing since many researchers don't actually see patients.

Dr. Donald Kotler: That's an easy question. If I had all the money in the world, I would study everything. But if I could only do one thing, what would I do? It would be a comprehensive program in which I wouldn't be looking for one treatment, but rather, I would use the combination.

It would be diet and it would be exercise and it would be medication. Our laboratory presented a study at the lipodystrophy meeting in London, in which we compared diet and exercise to diet and exercise plus the drug rosiglitazone [Avandia], or simply rosiglitazone alone. Rosiglitazone is an insulin-sensitizing agent; it's an antidiabetic agent.

The question we asked is: If we treat an HIV-positive person with big-belly lipodystrophy and an HIV-negative person who has a big-belly metabolic syndrome the same, would they respond the same?

If I got somebody who has HIV to lose 15 pounds and get into good shape, would his or her insulin resistance change the same as someone who is HIV negative?

Although we didn't have enough people in the study to be able to be absolutely confident of the results, it seemed that the two groups responded pretty much the same.

The average weight loss we got was about 15 pounds. The changes in an HIV-positive and in an HIV-negative person were really pretty much the same not only in the belly, but also in things like cholesterol and the special types of good cholesterol and bad cholesterol.

It looked like HIV didn't really influence it very much. So in the absence of any other information, I would treat an HIV-positive person the same as I would treat an HIV-negative person with metabolic syndrome. The best treatment is to treat it all -- not looking for one magic pill, but instead getting people to eat less, getting people to eat smarter and getting people to exercise more. If there is high cholesterol, bring it down. If the triglycerides and other types of fat are high, bring them down.

If the usual medicines don't work, well, then you try other things, like fish oil (omega-3 fatty acid) or niacin. There are a number of these new medicines that have been tried in HIV. They seem to work about as well in HIV as in non-HIV; it's not so different.

So I think that the optimal way to do it is a whole integrated program.

Bonnie Goldman: But don't you think that many patients around the country don't have a physician that they could turn to who may have this kind of very understanding point of view?

Dr. Donald Kotler: Maybe not a lot of private doctors, but there are a lot of clinics that are putting together metabolic clinics that are putting together expertise to look at having a cardiologist or an endocrinologist treating diabetes go into the HIV clinics to treat people.

You're right. It's not really fully integrated. But I think that would be the best.

Nelson Vergel: As an activist, I think the community also has to take an active role in advocating for things like this. In Houston, Texas, we have a non-profit where we provide exercise and dieticians looking at people's diets and trainers. Yet in the past five years, we haven't been able to duplicate these kinds of programs anywhere else because of money. Money and funding are really tight lately, especially in HIV. People sometimes don't even have the money to get the treatments, the HIV medications, which are basic. So it's a battle.

My next question -- which is really relating to this -- is: How do we get insurance companies or Medicare/Medicaid -- other systems that pay for medication -- how do we get them to accept that body changes in HIV are not a cosmetic issue, per se. It's something that not only affects people's self-esteem, anxiety and depression, and quality of life, but it may actually be something that also affects their survival, eventually.

That's where we have the most challenge right now. How do we shift from perceiving this as a cosmetic issue -- shifting third-party payers, insurance companies, to see it as a clinical problem?

Dr. Donald Kotler: It's not really a medical question. It's a question for activists. I think that the answer is activism. My suggestion would be to push it as a comprehensive care program, rather than a reimbursement for drug X. Because in fact some of the treatments are so costly that I don't know that I would be happy paying for the treatment in somebody who is not watching their diet or someone who would not consider doing exercise. Or even -- which is what's happened before and which is what I think limited it before -- you don't necessarily even look at the results of what you're doing; that it's really considered more of an entitlement to get the prescription, as opposed to having somebody measure you, work out your risk, give you some treatment and follow up. If you're not responding the way you should, look to find out why. Sometimes the medicine is not even being taken.

I think it's important to accept the fact that there's not a magic bullet, but there are a lot of things that you can do to help yourself. I think that the activists should really push on that.

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Reader Comments:

Comment by: Andrea (Houston, TX) Tue., Nov. 10, 2009 at 11:18 am EST
well charmaine my friend said to drink water after eating and that will make you like more fatter idk if it works but its worth a shot :)

Comment by: Christo Johson (Zambia) Tue., Nov. 10, 2009 at 5:57 am EST
What can I do to remove fat on my belly and back of my neck. Is there any doctor you know in Zambia who is able to carryout sculptra?

Comment by: charmaine (everywhere) Wed., Nov. 4, 2009 at 8:46 am EST
I am trying to find a way to put body fat back or gain weight.I have tried everything from ensure, pills n eating like a pig. Does anyone have any suggestions?????

Comment by: david (philadelphia) Thu., Sep. 10, 2009 at 10:43 pm EDT
Sculptra has an assistance program to get the product cheaper or even free. The bigger problem is the outrageous fee the doctor charges to inject it.

Comment by: Vivian Hernandez (New York, NY 10021) Mon., Apr. 13, 2009 at 12:37 pm EDT
I am currently taking Trizivir and took a holiday when I noticed fat in the back of my neck...I suffer real bad from lipodystrophy. I tried Atripa but didn't like it at all. I am now on a serious low fat, high fiber diet. Is there any way I can ward off buffalo hump?

Comment by: AK in Mass (Berkshire County, MA) Fri., Apr. 10, 2009 at 10:14 pm EDT
Hi Dauphneelee is right on! This is same old info; what about updates from those who DID get Medicare to pay for their treatments? What about info on good vs bad experience with fillers and implants? While new cases of lipo are now a thing of the past, there are thousands of us who still need help. Ive had 4 Sculptra treatments 5 years ago, and while it's not perfect, I am beter than if I had had any. Recently, after a serious bout with bronchitus and pnemonia, I found my belly expanding- due to water retention of the fat cells. I take "water pills" and its slowly dehydrating, but it looks awful. and my size 32, has expanded to a size 34. Thankfully my weight is fine (155lbs). Has anyone else had the same problem?

Comment by: Barry (Los Angeles, CA) Thu., Apr. 9, 2009 at 4:32 am EDT
If your health insurance is governed by a state agency, then it's best to check with that agency about their policies governing facial filler. Such as in CA, it is not considered "cosmetic" as defined by CA STATE ASSEMBLY BILL AB1621. However if your insurer is governed by Medicare, state regulations do not apply. In this case, google facial liloatrophy and you will find a host of info, incl. a same letter describing the psychological and mental effects of not treating disfigurement due to illness or treatment for illness. The next best step is to write your state and federal legislators to advocate for you. Often times this may require a letter describing the problem and why it should be considered a medical treatment and not cosmetic. Another source for support is enlisting the help of the manufacturers of facial fillers such as Sculptra and Restelayne, as they have a deep financial stake in getting the treatment approved. Finally compare the treatment to reconstruction after breast removal or hair lip surgery. That may make your letters more "human." I'm working on the issue from the Medicare viewpoint, as that's who regulates my health insurance carrier.

Comment by: Marie (new jersey) Fri., Apr. 3, 2009 at 12:13 pm EDT
I am trying to get my insurance to pay for my facial fillers. My dermatologist has sent a predetermination letter and I was informed that the codes were not correct. Can you tell what codes should be used and the proper verbiage for the letter. Thanks

Comment by: Robert Garrett (Ft Lauderdale, FL) Thu., Apr. 2, 2009 at 2:10 pm EDT
Can Deca contribute to belly size?

Comment by: DaphneeLee (rural NC) Thu., Apr. 2, 2009 at 1:49 pm EDT
After reading article there was nothing NEW to learn about LIPO. Well to be fair, he did go into great detail breaking down the differences and such but this is all old news, nothing new and the Doctors in US/HIV are still scratching their heads as to what to do. All this article demonstrated to me was we still have not moved forward and we desperately need to involve ourselves politically and educate and demand that our comprehensive medical needs be a part of best medical practices for our well being.

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