HIV ReSource Review - Issue 21By Donna Tinnerello, MS, RD, CDN |
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| Jules Levin is a person living with AIDS in New York City (NY). Jules sits on the boards of several companies, has the ear of the FDA and helps to make AIDS policy on the national level. |
| He considers it his mission to educate the community about HIV thereby ensuring that HIV-positive people get the best possible treatment. What makes his work even more effective is that he has the ear and the respect of most NY HIV treating physicians. |
| Jules is the founder of NATAP (National AIDS Treatment Advocacy Project) and the author of NATAP Reports (a newsletter with all the latest medical information). He is a national and international traveler and attends all the major conferences to get the latest research firsthand. |
| Jules, who can translate, simplify and disseminate life saving information, also gets the best speakers with the latest research for periodic large scale NY conferences. |
| As we all know, HIV medical issues are complex. Jules has recently pioneered the radio broadcasting venue with his weekly Sunday night radio show on WOR. He explores the most complex, cutting edge issues by interviewing the big names in AIDS research. |
| With this show Jules has the opportunity to provide a valuable resource to busy HIV specialists and people challenged by HIV. |
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| We asked NY resident Donna Tinnerello, MS, RD to talk with Jules about his state of health, nutritional status and opinions. This transcript is the result of Donna’s interview with Jules. |
| Donna:
We know you are very open about your HIV status and extremely active
in your agency. In addition you serve on the boards of several companies
and help make HIV policy at a national level. I know you are passionate
about your work, a fluent writer and communicator. You write a newsletter
(NATAP Reports) and have recently pioneered the radio broadcasting venue
to get the word out about HIV medical issues to an even wider audience.
It is clear to me that you can understand the most complex issues surrounding HIV. What makes your opinion exceptionally valuable is your ability to translate, simplify and disseminate lifesaving information to people living with HIV/AIDS (PLWHA). You are also held in high regard by HIV treating physicians for your work with the community and your ability to pull together some of the best HIV conferences in NY. Let’s talk about your health status and lipodystrophy. You admit to having many of the classic features of this syndrome. I know you are on top of the research. What are your thoughts about the pathogenesis and treatment of lipodystrophy and what do you think is the most likely cause? Can you tell us on what do you base your opinion? |
Jules: This
subject has received considerable attention recently and I hope and feel
it will receive continued attention. Initially last year it was thought
that protease inhibitors caused lipodystrophy symptoms (fat redistribution,
lipid elevations). An Australian research group reported their study suggesting
a relationship between the two. Since then, researchers have reported on
two other studies both disputing the Australian findings. They note that
protease inhibitors are not the lone cause of the syndrome. In fact, the
more we learn about lipodystrophy it appears to me the less we appear to
really know. A number of factors have been identified as possibly being
related to causing lipodystrophy. These include:
Now people believe NNRTIs may cause lipodystrophy. This past year studies have found people with lipodystrophy who never took protease inhibitors but had taken only NNRTIs. Important questions are -- Can we develop therapeutic intervention to reverse or prevent lipodystrophy? Does switching from a PI regimen to a NNRTI regimen reverse lipodystrophy?-- Several studies show that switching to a nevirapine based regimen improves lipids in the short term. Studies have only been looking at this now for about a year. Patients have sometimes reported that they see improved physical changes. It appears that switching to a nevirapine regimen may reverse symptoms for some. Results of switching to efavirenz are more mixed. Triglycerides went down in one study but not in others. Good cholesterol goes up and bad cholesterol decreases. Reports of improved physical appearance from patients are more mixed. I have heard a few reports of reversed lipodystrophy by switching to Amprenavir. Preliminary data suggests saquinavir does not increase lipids as much as the other protease inhibitors. I attend just about every AIDS meeting and conference and read much of the available information. I try to stay very informed on latest developments and speak with researchers on a regular basis. (Author’s note: Dr. Donald Kotler was a recent guest on Jules Sunday night radio program -- the topic was lipodystrophy.) |
| Donna: Can you explain the state of your health before starting on HAART from a medical standpoint and your nutritional status? |
| Jules: I have had HIV for probably 17 or more years. I started AZT monotherapy about 6 years ago and added 3TC about a year later. I started a double-PI 4 drug regimen about 3 years ago. My CD4s had just declined to 80 before starting HAART. I have never experienced an opportunistic infection. My diet used to be much better in terms of watching fatty foods, etc. Now I do not pay enough attention to that and I eat steaks, shrimps, etc. |
| Donna: After you started taking the medications, (protease inhibitor and non nucleosides), how long was it before you started seeing physical changes in your body? Can you describe what it feels like? Did it affect your appetite and your ability to eat? |
| Jules: For the first year after starting HAART I gained weight and was told I looked good. After one year I started to see lipodystrophy symptoms. My face, legs and arms looked skinnier and my stomach started to get bigger. My cholesterol and triglycerides started to increase. Having these physical changes is upsetting and I feel self conscious about them and worried about whether they can be reversed. I recently started taking insulin for diabetes and that has increased my appetite and consequently my weight. |
| Donna: You have changes in your blood lipid profile. What is the range of values and how do they compare with levels before therapy? High-density lipoproteins (HDLs) are protective and Low-density lipoproteins (LDLs) pathogenic. Are you on lipid lowering medications? |
| Jules: My lipids and glucose were under control when I exercised frequently. I used to jog and bike for 4-5 hours every week and I had a cleaner diet with fewer fats. Since developing NATAP I have been very busy and allowed my workouts to diminish. My lipids and glucose started to go up to 230 for cholesterol and 300 for triglycerides. However, I started hepatitis C (HCV) treatment with interferon and ribivarin two months ago. The effect of these drugs is chronic fatigue so I have had to stop exercising. As a result my lipids increased. I hope to start exercising again after I stop the HCV treatment, which may last 6-10 months. I am not on lipid lowering medications. |
| Donna: Diabetes is also part of the syndrome for you. Do you have a family history of diabetes and are you taking oral medications or insulin? |
| Jules: My father and mother’s father both had adult onset diabetes. I am taking insulin several times per day. |
| Donna: Have you ever had to go off HAART and if so, did you see any immediate changes in your metabolic profile? |
| Jules: I have not stopped or interrupted HAART since starting. High levels of blood fats, changes in body habitus and premature diabetes appear to be a common sequelae of some treated PLWHA. It is logical to think that adding more fuel to the fire (for example, high fat, high sugar, high calorie diets) can exacerbate an already dangerous situation. |
| Donna: I agree, it is a complicated situation. How do you manage your blood lipids and diabetes with diet? You are always on the run and you travel to all parts of the world attending conferences and meetings. How easy is it to find the right kind of food? |
| Jules: It is difficult. As I said above, my diet is not as good as it used to be or as good as it should be. First, I work so hard that I feel a need to reward myself with eating satisfying foods, which usually amounts to fatty foods. Second, as you suggest when traveling it can be more difficult to eat healthier. |
| Donna: Where do you look for information on nutritional management of HIV and the new syndrome? |
| Jules: I do not seek out information on better diet and nutrition. I have some background knowledge because I followed a macrobiotic diet for several years. This lifestyle taught me a lot about diet. |
| Donna: Did dietary modifications make a difference in your blood lipids and blood sugar? |
| Jules: When I was macrobiotic and regularly exercised 4-5 hours per week, my lipids and glucose were within normal ranges on a regular basis. |
| Donna: It is my experience that many PLWHA who have metabolic changes are reluctant to make dietary changes because they feel this is an inevitable outcome regardless of what they do. How would you respond to the community on this issue? |
| Jules: This is not true. Diet and exercise can improve lipids and glucose for some. Several studies and personal reports show that. But diet and exercise may not help others. I strongly recommend individuals try diet and exercise first but talk to your doctor before exercising. |
| Donna: There are a lot of HIV doctors in New York and there are mixed feelings about treating blood lipid elevations. Some feel that it is a side effect of drugs and not enough of a risk factor to treat medically. What are your opinions on the ramifications of untreated hyperlipidemia and on the need for medical treatment? At what point do you think lipid lowering agents should be initiated? |
| Jules:A
few studies suggest that the risk of heart disease is low in the near future
since it may generally take a number of years for heart disease to develop.
There have been however, reports of individuals getting heart disease.
We do not know for sure if they might have gotten it anyway. It appears
to me that some individuals are at increased risk for developing heart
disease in the near term. Bad diet and smoking cigarettes will likely increase
that risk.
The ACTG is about to publish guidelines on monitoring lipids and glucose, cut-off for interventions, what those interventions should be, and which lipid lowering drugs are preferable. I do not feel qualified to say when people should consider beginning use of lipid lowering agents but I think glucose above 175, triglycerides above 300 and cholesterol above 200 should trigger concern. |
| Donna: What do you think of the use of growth hormone and anabolic agents to prevent or treat the physical aspects of lipodystrophy? |
| Jules:
This is another area I am not very familiar with. I think the long-term
use of steroids may have unforeseen and negative effects for individuals
who use them on an ongoing basis. Doctors are only now realizing this and
I am hearing reports that some doctors do not want to prescribe them anymore.
I have heard mixed reports about whether using steroids can help prevent or reverse lipodystrophy. Early research suggests growth hormone can reduce fatty deposits such as fat stomachs. It appears that growth hormone will not reverse fat redistribution. Even the manufacturer says it's not expected to reverse wasting in face, arms, etc. After several smaller preliminary studies Serono (the manufacturer of Serostim) is planning a larger study to confirm if growth hormone reduces fat deposits. The early studies suggest it can reduce fat deposits but not reverse wasting in periphery (fat, arms, legs, etc). I have not taken growth hormone or steroids. |
| Donna: Dr. Kotler stated on your radio broadcast that no one should try to treat the syndrome with herbal or alternative treatments. What is your opinion on alternative therapies? |
| Jules: I
would try something if it might be helpful but will not harm me however,
the effects of herbs have not been characterized. There have been reports
that some herbs have harmed people. It is possible that some herbs may
have negative interactions on blood levels of protease inhibitors or NNRTIs.
These questions have not been addressed and concerns about the effects
of herbs remain unclear.
Since there are such safety concerns, and no evidence to me that they help, I do not take them. I feel obliged to inform people about these concerns, but I do not tell people what they should or should not do. I do not see any harm in acupuncture, mediation, yoga, exercise, good diet, etc. Based on my experience and knowledge, I do not feel a strict vegetarian meat-less macrobiotic diet is healthy for people with HIV or AIDS. |
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First published on July 1, 1996, as the HIV ReSource Review, the HIV Nutrition Update offers timely information on nutrition, research, and HIV in four online issues each year. Article information is supplemented by reviewing conference proceedings and expert recommendations. Online newsletters have 'live' web site links and PDF files for downloading. |
HIV ReSource Review
Feature Abstracts Issues 27-30 |
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