Monthly Archives - May 2009

Caribbean cruise and retreat

Caribbean cruise and retreatThe combined gay and hetero Caribbean Positive Cruise is scheduled for October 10–18, and expects to sell out in early June. There are separate, as well as combined, activities for the two groups. The cruise sails for eight nights, beginning at Ft. Lauderdale on Saturday, October 10, with stops in St. Thomas, Antigua, Tortola, and Nassau. Rates begin at $535 per person, plus taxes. The annual cruise, which also serves as a fundraiser for HIV organizations, provides educational forums in addition to social activities, and starts out with a Celebration of Life Ceremony. This year’s speakers include Dr. Michael Wohlfeiler and treatment activist Nelson Vergel (whose photograph graces this issue’s cover). For more information, visitwww.hivcruise.com for the gay group andwww.positivecruise.com for the heterosexual group.

Eating healthy when unable to prepare meals

Eating healthy when unable to prepare meals
May 17, 2009I suffer from Bipolar disorder and while I generally have a good grasp on it, there are days where I will not get out of bed or just stay in the shower all day. I see a counselor and we sometimes tweak my medications, but regardless I end up crashing eventually. It’s lasted a bit over a week at most.I am not worried about missing doses of any medications, as I’ve always been able to continue taking them every day, but I am not always able to feed myself. Sometimes I’ll just sleep through hunger pains, or I will not feel them for a day or two.A friend of mine checked up on me during one of these episodes. I had energy but every part of my body felt sore. I had no desire to eat, no appetite, it seemed just too troublesome to pour cereal or scramble some eggs. They brought over a big box of Ensure and left it in the fridge for me.I have been drinking these and trying to get myself up every now and then and the soreness went away after a few days. Sometimes I can eat a bowl of cereal, but I never finish the whole thing. I’ve started eating burgers again though, yogurt sometimes, and drinking 2% milk instead of the 1/2% I used to drink. In short, I’m starting to get back out of this.Before I became positive, while I knew this wasn’t healthy, it didn’t seem to effect me the way it does now. I am taking Atripla and have responded very well to it, but am aware that I need to take better care of myself, including my diet. Are there any simple and healthy things I can keep around to eat should this happen again?Afterthought: I owe my friend about $40. That Ensure turns out to be expensive!

    Response from Mr. VergelEnsure is full of corn syrup and sugar. I hate the stuff unless that is all you can consume.I am very lazy most of the time when it comes to making meals. These are a few tips for people who do not have energy to cook:- Boil eggs and keep them in the fridge for quick snacks – Buy tuna canned in olive oil. You can eat it out of the can. – Buy peanut butter and 12 grain bread. Make yourself a fast and easy sandwich. -Buy a large container of whey protein that mixes easily with milk. I love Isopure since it is so light. Buy frozen fruit in large bags at the grocery store and make shakes with fruit and whey. Add ground flaxseed for fiber. -Low fat cheese with multigrain crakers will give you good calories and calcium -Buy lean ground turkey and lightly cook it with olive oil, spices and add a container of tomato spagetty sauce. Freeze it in small containers for later consumption. – Make oatmeal with milk, whey protein, almonds, and honey. Freeze it in small containers so that you can have it ready for quick breakfasts. – I love unsweetened low fat yogurt (the ones made by Greek companies are always goo). I add nuts, honey, and fruit to it. – I make large pots of wild rice and mix it with lean ground beef (or the turkey I mentioned before). Believe it or not, rice mixed with tuna is also great, fast, tasty and full of protein and fiber. – I have mixed nuts in my office, car, and by the bed if I get hungry.Etc, etc…I hope this helpsNelson

Doctors and Patients Tell Medicare to Approve Facial Reconstruction

To see all comments provided by doctors and patients to Medicare to covince them to pay for facial wasting reconstruction, cut and paste this link to your browser:

I surely hope that Medicare approves Sculptra, Radiesse and Silikon 1000 reimbursement to help those on disability and to set a precedent for insurance companies to follow. It has been six years and most people who need facial reconstruction cannot afford it even if helped through patient assistance programs.  The average reconstruction costs around $5000
Nelson
See more on facialwasting.org

What Supplements Can I take with HIV medications?

Supplementation while on Meds
Apr 13, 2009Hi I have been + for 4 years now workout regularly have built some of the muscle back that I lost. I am on Prezista and Truvata with Norvir. Is it ok to supplement with Creatine (Cell-Tech), and Protein (Nitro-Tech) along wiht Glutamine?

    Response from Mr. VergelGreat question.Creatine+ Exercise versus Exercise alone in HIV+ Men:( from http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2646129 )Dr Mulligan et al performed a randomized, double blind, placebo-controlled, clinical research center-based, outpatient study in San Francisco. 40 HIVpositive men (20 creatine, 20 placebo) enrolled in a 14-week study. Subjects were randomly assigned to receive creatine monohydrate or placebo for 14 weeks. Treatment began with a loading dose of 20 g/day or an equivalent number of placebo capsules for 5 days, followed by maintenance dosing of 4.8 g/day or placebo. Beginning at week 2 and continuing to week 14, all subjects underwent thrice-weekly supervised resistance exercise while continuing on the assigned study medication (with repeated 6-week cycles of loading and maintenance). The main outcome measurements included muscle strength (one repetition maximum), energetics (31P magnetic resonance spectroscopy), composition and size (magnetic resonance imaging), as well as total body composition (dual-energy X-ray absorptiometry). Thirty-three subjects completed the study (17 creatine, 16 placebo). Strength increased in all 8 muscle groups studied following progressive resistance exercise, but this increase was not augmented by creatine supplementation (average increase 44 vs. 42%, difference 2%, 95% CI −9.5% to 13.9%) in creatine and placebo, respectively). There were no differences between groups in changes in muscle energetics. Thigh muscle cross-sectional area increased following resistance exercise, with no additive effect of creatine. Lean body mass (LBM) increased to a significantly greater extent with creatine.They saw increases in creatinine in some patients taking creatine, so you need to watch your kidney function. They did not see changes in viral load so hopefully this means that there were no drug-drug interactions with this supplement.Whey Protein Use in HIV+ Women (From http://journals.lww.com/aidsonline/pages/articleviewer.aspx?year=2001&issue=12070&article=00011&type=abstract)Denise Agin et al studied the use of whey protein plus or minus exercise in HIV+ women and found that resistance exercise significantly increased body cell mass (BCM), muscle mass, muscle strength, and QOL in HIV-infected women with reduced BCM. Whey protein had little effect on BCM accrual. Combined protein and exercise did not increase BCM in excess of gains achieved by exercise alone.Whey Protein in HIV+ Men (from http://www.ajcn.org/cgi/content/abstract/88/5/1313 )Dr Satler et al studied the use of whey protein supplement without exercise and found no increases in lean body mass in patients. Patients seem to adjust their calory intake daily when taking the shakes, so the net effect on calories was not improved. There seemed to be some improvement in CD4 cell counts with whey, though. Diarrhea and bloating also were more common in those taking whey.Glutamine (http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102231134.html):This supplement has been shown to improve gut function and diarrhea in some studies. There one was a study done by Dr Shabert et al that found that glutamine plus an antioxidant improved lean body mass in people taking that combination. She even compared her results with those obtained with growth hormone, I remember.So, it seems that there is some benefit of taking these popular body building supplements if used with exercise. But I would watch creatinine blood levels to make sure that your kidneys handle the extra load. Of course, we really cannot say much about specific brands since quality control may be an issue in some supplement companies.I always tell people to consult with the houstonbuyersclub.com for HIV specific information on supplements and brands to trust.I hope this helpedNelson

What is happening to Nandrolone??
May 10, 2009hey NelsonI enjoyed your book Built to Survive. It really helped me to realize what nandrolone could do for my health and body shape. I have been using nandrolone for 10 years without side effects and I have been able to reshape my body after lipodystrophy. But now I cannot get it anymore and compounding pharmacies are telling me that China is not exporting the raw material anymore to the United States. I really do not want to look like crap again and my energy level drops horribly without nandrolone. What can we do to get it? I am desperateEd

    Response from Mr. VergelWell, it seems that China has stopped shipping nandrolone’s raw material (basically powder to be mixed in oil) to the US . As most of you know, Watson, the last maker of nandrolone, dropped the product a year ago to carry Oxandrin, a drug ten times more expensive, less effective, and potentially troublesome to the liver. Compounding pharmacies picked up the market and sold nandrolone at a third of what Watson was selling it at. The Drug Enforcement Agency frequently visited several compounders unannounced and took files away for weeks for review to see if every sale had a supporting prescription from a doctor. These visits happened more and more frequently as the steroid scandal in baseball, etc heated with congress’ witch hunt. A few shut down. There are few left providing the product to us, but now they are telling us that may stop. We really do not know why China stopped. My network is not that great to find out. It may have been related to the small clinical market and its off label use.Nandrolone is available cheaply in Mexico and most countries around the world. However, we cannot import it even with a HIV-related prescription because nandrolone is a DEA controlled substance (class III). For those of you long term survivors, you may remember that we used to import stuff that we used to think was going to save our lives in the 80’s and early 90’s and the FDA/DEA never got in the way. But asking to be allowed to import a steroid may be different.Nonetheless, I am wanting to write a petition to the FDA and the DEA to allow us to import it (3 month supply) for HIV related unintentional weight loss and frailty/fatigue . We could make a case with the FDA/DEA about the lack of supply and our needs ( I sent you guys a survey that could help me list different reasons, link below). One problem that we have is that nandrolone is not approved for a HIV indication, even though there are several well done studies of its effectiveness in increasing strength, lean body mass, and stamina in HIV+ patients (men and women) . Hopefully a company will get smart and pick the drug up and run for a NDA (new drug application) for HIV with the great available data. But that is not a sure thing yet.Anyway, do you guys think it is a feasible idea? I know the FDA and the DEA will have a big problem with this petition, but at least we are pressuring federal agencies that are funded with our tax payer money.FOR BACKGROUND INFO: http://savehivwastingmeds.blogspot.com/HELP ME COLLECT YOUR EXPERIENCE WITH NANDROLONE: http://www.surveymonkey.com/s.aspx?sm=_2frprhdUDFuKijnWXLOfGwA_3d_3dSEE WHAT SOME PATIENTS HAVE SAID SO FAR ABOUT THE BENEFITS OF NANDROLONE IN THEIR LIVES: http://www.surveymonkey.com/sr.aspx?sm=VqCK45gHXi10L4l2eihyx4wu7TOCkZLFELVFHERJwDA_3dI hope you can help me!Nelson

Dealing with Fatigue- From TheBody.com

    Response from Mr. VergelI feel your pain :)I have dealt with this problem for years. I have good days and not so good days. Let me tell you what I have tried after reading research studies:Exercise- Exercise improves fatigue. I know…how do you exercise if you are tired? When I am exhausted I skip the gym, but if I have a little energy left I do a very light work out using weight settings that are half or less of my usual. I feel much better sometimes just showing up at the gym!Good sleep- I find that I need 8 hours. If I do not get them, I pay the price. I was concerned about sleep apnea since I wake up at least 2-3 times a night. My doctor prescribed a sleep study. You sleep in a clinic (with nice rooms that look like a hotel) and they hook you up to wires to measure your breathing, your brain waves, and your oxygen levels. I was diagnosed with mild sleep apnea and now have to go get a CPAP machine fitted soon. Google “CPAP sleep apnea” for more info.Do not eat dinner late.If you are not sleeping well because you feel like you need to pee frequently, have your doctor check your prostate to make sure it is not enlarged. Also, get a prostatic specific antigen (PSA) done just to make sure you do not have prostate cancer or prostatitis (infection). Sleep apnea can also give you the false impression that you need to pee, by the way.Provigil – This drug really helps me to feel awake when I have to work or travel. A study done in HIV found it to be effective to improve energy and depression. I start with 200 mg once a day in the morning. Most people use it twice a day but be careful not to take it too late or your sleep will be affected. It can make some people feel too “speedy” but I think this can be managed with a lower dose, even if you have to cut the pill in half. Also, we have some concerns of drug-drug interactions since it is metabolized by the same path as protease inhibitors, but no pharmaceutical company has agreed to do an interaction study of this popular drug. One of the best things of this drug is that it is not an amphetamine and your doctor can call it in without “triplicate” prescription requirements usually needed for drugs like Ritalin or Adderrall, two other really popular drugs used for HIV related fatigue.Wellbutrin- This antidepressant has stimulating effects on many. It does not seem to affect sexual function as much as most antidepressants.Coffee- My best friend. But you can crash after an hour or two, so be careful.Eating small balanced meals and avoiding sugars- This can keep your blood sugar more constant through the day. A peanut butter sandwich (or better yet, an almond butter one) on multigrain bread, or low fat cheese with apples can provide a good snack before the gym.Creatine- This supplement may help many. It increases strength in exercise and lean body mass. There is study that showed that our brains may have lower creatine levels than normal which could be associated with our fatigue. We need more data. Some people have gut problems or increases in creatinine that bothers doctors, so keep an eye on that.Carnitine + Coenzyme Q-10- These two supplements together have anecdotally helped some people with fatigue. I swear by a combo of 300 mg of Coenzyme Q-10 and 2000 mg of L-carnitine a day. Besides, the combo may have heart protective properties.Reduce your blood pressure with diet, exercise or medications. High blood pressure can make you feel winded. But nany blood pressure medications can also make you feel tired. So talk to your doctor.Hormones- Have your doctor check your thyroid, testosterone, DHEA and morning cortisone. You can supplement any of them that is found to be low.Hemoglobin- This is an automatic test that you get done with your blood work, so it is usually easily detected. Low hemoglobin can be caused by anemia, which can make you really tired.B-12 vitamin deficiency- Have your doctor check your blood levels of this vitamin. I inject one cc a week and I notice improvements in energy and appetite. We need more data on B-12 injections and HIV. It seems that oral forms do not get absorbed as well.Drug side effects- Sustiva made me extremely tired (it is also part of Atripla). Diovan for blood pressure had the same effect on me. This is one of the most challenging things to diagnose since most of us are taking so many pills.High HIV viral load- Has been associated with fatigue in some studies, so keep it undetectable if you can.Dehydration- Most of us do not drink enough water and are walking around tired due to dehydration. Drink 6-8 glasses of water a day if you can. Avoid fruit juices since most are loaded with sugar.Your heart-If all of the above does not work, talk to your doctor about a full cardiovascular work up with a stress test, EKG, and other tests that measure how your heart is working. People with heart problems experience a lot of fatigue.I am sure I am forgetting something..but these are the most important things that I have had to check in my life with fatigue.I hope this helps. Let me know if you find something that works!Nelson

Body Shape Changes Dramatically Impact the Self-Esteem of HIV-Positive People

BBody Shape Changes Dramatically Impact the Self-Esteem of HIV-Positive People

An Interview With Nelson Vergel

By Bonnie GoldmanApril 15, 2009

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Hi there! This is Bonnie Goldman, editorial director of TheBody.com.Today we’re going to take a look at body shape changes, an ongoing problem for many people living with HIV. These changes are sometimes known as lipodystrophy, lipoatrophy or lipohypertrophy, but they all involve the same thing: An unusual amount of fat loss or fat gain in specific parts of the body. Some people with HIV have watched their face, legs, arms or buttocks transformed by fat wasting. Others have seen the growth of fat deposits on their backs or necks. Men and woman alike have even watched their breasts swell due to this problem.These physical changes are relatively well known. But there’s another side to body shape changes that receives much less attention: the emotional side. That’s what we’re going to talk about today: the impact that body shape changes have on the everyday lives of people with HIV.

This podcast is a part of the series “HIV News & Views.” To subscribe to this series, click here.

I have with me today Nelson Vergel, a longtime AIDS activist and 26 year survivor of HIV. He runs a popular HIV/AIDS e-mail mailing list and is a frequent speaker at workshops across the country. He has been witness to the emotions tied to these often disfiguring body shape changes, and he’s watched the desperation escalate as the years pass without any solution.Last year, Nelson created an anonymous Internet survey that asks people with HIV to detail the impact of body shape changes on their quality of life and self-esteem. The survey results were presented at a major medical conference in London last fall. I am pleased to have Nelson here today to discuss his survey and the rather troubling results.

Nelson Vergel, B.S.Ch.E., M.B.A.Nelson Vergel, B.S.Ch.E., M.B.A.

Welcome Nelson!Hi, Bonnie. Thanks for having me again.I thought today would be a great moment to talk with you about the poster that you presented at an international conference that was held in London, I believe.1Yes, in London. The conference was the 10th International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV, which was held this past November.You are an activist. Isn’t it unusual for an activist to present a poster at a medical conference?Yes, but only because very few activists are aware that we can conduct, and present posters on, socially related studies. My background is chemical engineering and I have an MBA, so I have no real medical background. However, I wanted to do this survey, because no one had conducted an in-depth survey of what people are going through with respect to body changes in HIV.We’ve had some studies — small ones — where questions about this were asked. How do you feel? Is this depressing you?They showed that people were experiencing stress, anxiety, low self-esteem, etc. But I wanted to dig deeper into the issue, so I posted a 23-question survey online and The Body actually helped me out a lot by getting the word out. I had 1,100 people answer the survey in a matter of six months. The poster was presented to show the results of that survey.So you did this survey to meet an unaddressed need?Yes, my feeling as an activist is that we’re moving away from lipodystrophy research. No one is addressing the lack of reimbursement for facial wasting treatments, hump removal or liposuction. We’re having a lot of trouble getting these options reimbursed by Medicare, Medicaid, insurance companies and patient assistance programs. So I wanted to let researchers know that this problem is not gone. A lot of patients are suffering from this problem and they’re not getting reimbursement and coverage of the therapy.It’s not only a reimbursement issue. Isn’t it also a huge emotional issue?It’s extremely emotional. I’ve been positive for 25 years, and nobody wants to look sick. Nobody. Even if we are not feeling very well. I hate when I go to work and people say, “Oh, you don’t look very good.” I don’t want to hear that or, “What happened to you? You look tired. Are you losing weight?” Everybody wants to look healthy. So yes, it’s a huge emotional issue.Don’t you think it’s more than just looking sick?It’s also looking older than you are. Looking unattractive. It’s being afraid to go out and show your face. Being afraid to go back to work, if you’re on disability. Being afraid to be found out that you’re HIV positive, if you’re in the closet about it. There are many, many issues. This is an issue especially for the many HIV-positive people who are in the entertainment field, hotel management and other professions that require dealing with the public.The most surprising thing in this survey is that out of 1,100 [At the time the survey was presented at the London conference, only 949 need people had answered. Since the presentation, 1,100 people have responded.] Of the people that answered, 25 percent of them had thought about suicide in the past. Forme, that was shocking. The survey also showed that 87 percent of the participants experienced anxiety and depression related to body changes.That is very shocking. Don’t you think part of that pain is due to the general lack of acknowledgement by HIV doctors regarding what HIV-positive people are going through in terms of losing fat in their faces or legs? Some doctors just say, “OK, well just take your pills then.”They don’t really say that, because doctors know better. Instead, they say, “Look how well you’re doing. Your CD4s are up. You’re undetectable. You’re alive now.”I have to say, many doctors are really trying hard to educate themselves on lipoatrophy and lipodystrophy options. They really are.To be honest with you, I don’t think we’re doing enough to educate doctors about patient assistance programs and about where to send patients when they bring up the issue of facial wasting, a big belly, buffalo hump or enlargement of the parotid glands [the largest of the salivary glands], which when inflamed can be visible as swellings on the sides of the face.It’s not as if doctors don’t want to help. A lot of doctors are not educated on the subject, because there haven’t been good efforts to train them beyond what we know about tenofovir [Viread] not causing lipoatrophy as much as d4T [Zerit, stavudine] or AZT [Retrovir, zidovudine].Doctors do not know what options are available to patients with body changes and who is paying for them. They need to be educated about that. So that’s my goal, not only via this survey, but also through my Web site FacialWasting.org. I have a list of doctors who are doing different things. And I know The Body has done a great job with its Lipoatrophy Resource Center. You probably are the only ones who have that on the Internet. Yet, we have to do a lot more work on showing resources to people. How do you apply to a patient assistance program to get help with your payments? What are the options out there? Doctors don’t really know.I think it is time to set up lectures and seminars to educate doctors, so that when the patient says, “Look at my face. Look at my belly. Look at my veiny legs. Look at my butt. I can’t sit for more than 10 minutes without hurting. What can I do?” The doctor can say, “Look at this table of options,” “Call these people,” or “Here’s a referral.”That’s what I want to do.A lot of people think that this is an old issue. They think that people who were diagnosed in the last couple of years are not going to have this experience and so we don’t have to talk about it anymore.It’s almost like we’re dinosaurs about to become extinct, you know? [Laughs.] That’s an excellent point. If you were recently infected, or were infected in the past four years and you started medications in the past three years, you’re probably going to have less of a problem, because doctors are not prescribing the main culprits of facial lipoatrophy and body lipoatrophy, which are Zerit and AZT (this drug is also present in Combivir).Crixivan [indinavir] causes some problems with insulin resistance and belly fat, but it is also no longer prescribed in the U.S. So yes, your chances of experiencing lipoatrophy are going to be lower, but I’m still hearing from recently diagnosed people taking Atripla [efavirenz/tenofovir/FTC], or a very, very lipid-friendly combination, that are experiencing body changes.A study done by the ACTG [AIDS Clinical Trials Group] actually showed that 11 percent of people taking tenofovir, 3TC [Epivir, lamivudine] and Sustiva [efavirenz, Stocrin] experience lipoatrophy. That’s 11 percent of people who have never been exposed to AZT or d4T, so there is a minority of patients thatmay have lipoatrophy even though they have never been exposed to the main culprits of this problem.Isn’t it true that we still don’t really understand how or why body shape changes are happening?Not yet. We don’t have all the answers. We don’t even have what we call a “case definition,” meaning researchers and clinicians have not agreed on how we are going to define this syndrome. Actually, it’snot a syndrome. It’s a combination of syndromes and that’s what makes it even more difficult to classify for insurance companies and Medicare. “What is this? What is this diagnosis?”Now, tell me about your survey.Impact of Lipodystrophy on Quality of Life and Self Esteem Survey QuestionsThe survey included mostly white patients who are over 40 years old that have been positive for more than 15 years. Unfortunately, not many Latinos like me, black people, American Indians or Asians took the survey. Also, most of those who responded were male. Maybe more males were exposed to the drugs that caused facial wasting. Or maybe more males are accessing the Internet.Remember, this survey was only available on the Internet, so it was skewed in that way. And the participants had been positive for around 15 to 20 years. I would say 20 to 30 percent have been HIV positive for more than 20 years, which makes me feel a little good because I usually feel lonely being a long-term survivor who has had HIV for 25 years. Out of 1,100 [people, 275 were living with HIV for more than 20 years.Eighty-four percent of these men and women were exposed to Zerit, for example. Of course, many of them are experiencing lipoatrophy, facial wasting and all that. Eighty percent of participants were exposed to AZT. Fifty-one percent had taken Crixivan, which is another drug that has been implicated insome of these problems.My survey is a little bit biased since it includes so many long-term survivors who have been exposed to a lot of these old drugs. They have experienced more problems with body composition and body changes.Will this happen to newly diagnosed people who are taking Atripla? I don’t think it’ll be as big of a problem. We do have to still research what’s happening to those 11 percent that I mentioned before, but at the same time there are thousands of us.Out of 1.2 million people in the United States who are HIV positive, around 450,000 are taking medications. Out of those, maybe half, probably more have been exposed to HIV medications for over 10 years. So there are around 250,000 people that may have somebody changes in this country.Yes, we are the older generation. Yes, we need help. I hear clinicians say, “Our research is more focused now on insulin resistance and metabolic syndrome.” I keep reminding them that we need to deal with fat accumulation. Nobody has a real good answer about why our bellies increase. Even in the new studies with Atripla, we see fat increase in the visceral area (in the organs area). So belly fat accumulation is still happening.What we’re not seeing as much is lipoatrophy, which is fat loss under the skin. We’re not seeing as much of that, but we’re seeing fat accumulation. We’re seeing muscle loss too that is not being researched.So Nelson, your survey attempted to describe the problem in greater detail.Yes. What are people suffering from? What are the needs out there? It is a biased sample, because it did not include that many people who were infected under five years ago.I’m going to tell you something else. I asked the question, “What kind of body changes are you experiencing or have you experienced?”

  • Sixty-three percent of them said belly fat gain.
  • Seventy-eight percent said facial wasting.
  • Seventy-two percent said butt wasting.
  • Sixty-eight percent said veiny legs and arms.
  • Twenty-two percent said increased breast size — some women and men can have an increase in their breast tissue.

So, as you can tell, most of them have experienced some changes and they’re pretty severe.Impact of Lipodystrophy on Quality of Life and Self Esteem Survey QuestionsTo the question: “Have you experienced depression or anxiety due to the body changes?” Eighty-eight percent said yes. Eighty-eight percent. This is notvanity. People have said, “Get over it. We’re older. We’re not ever going to look as good as we used to.”This is bullshit. I tell people that when you look 20 years older than you are, when you look like you are going to die, when you look like you are sick, or when you have 300 to 400 T cells, you worry. Of course you do. Probably the most important question I asked people was, “What has changed in your life because of this?” The number one answer: 74% said decreased sexual activity. Number two was stopped socializing and going out to meet people.People are feeling so self-conscious. They’re not going out to meet new people and, obviously, they’re not having as much sex, because they’re afraid to be rejected or they are being rejected for their looks.

  • Fifty-one percent said they had stopped dating.
  • Sixty percent said they “worry too much about people finding out they are positive.”
  • Fifty-seven percent said they stopped looking at themselves in the mirror. They probably just comb their hair in the morning; When we were young, you remember how many times we used to look at ourselves in the mirror?

So a lot of self-esteem issues?Yes. Most change their clothing style, wearing more baggy clothing to hide bellies. Thirty percent said they have depleted their money in search of a solution.Then I asked them in this survey, “What have you done to try to reverse your body changes?” Obviously, the two top things people say are, “I’m exercising more,” 73 percent, and “I’m watching what I eat,” 72 percent.Fortunately and unfortunately, we have very few studies — tiny, tiny studies — on exercise that haveshown some benefits in body shape changes. With exercise we have seen decreases in visceral fat and increases in muscle mass. Actually, I think exercise therapy should be a therapy in HIV and should be reimbursed as such. That’s one of my activist goals.Many people mentioned that they watch what they are eating because of their body shape changes. Unfortunately, we only have maybe two studies — very tiny cohorts — that show that there may be some influence with respect to what we’re eating, but not really. We’re not seeing that dramatic of a difference by decreasing carbohydrates.Actually, there’s not a single well done study that shows whether or not, for instance, we will have any improvements in visceral fat if we decrease our carbohydrate intake. Nobody has done that study and it makes sense to do it.What else? Forty-one percent of the people who took the survey said that they had had their face injected with a filler or a cosmetic product, which is probably what most people would like to do, because there are some options like Sculptra [an injectable product made of poly-L-lactic acid; also known as New-Fill] and Radiesse [a dermal filler made of calcium-based microspheres suspended in a water-based gel] in the United States that have patient assistance programs.Forty-five percent took supplements even though we have no data whatsoever on supplements. Forty-seven percent took testosterone, though there could be many reasons for that. Maybe people had a low sex drive. But testosterone has been shown to decrease waist size in one ACTG study, in which a one-inch decrease in waist size was seen, though it was mostly fat under the skin, not visceral fat that went down.Some people have used growth hormone. Some people have used anabolic steroids. Very few people undergo liposuction.A hot subject for a lot of people was butt implants. People are getting their buttocks fixed, but very few can afford that, because it’s a lot of money and you have to go to Mexico or Canada for the procedure. It’s only for the few that have over $6,000 to spend. Some people are using padded underwear. That’s a really cool option. It only costs $25. [For a list of suppliers for butt enhancers, visit TheBody.com’sLipoatrophy Resource Center.]People think it’s cosmetic, it’s superficial, it’s narcissistic. It’s really not. People just want to look normal and they want to feel comfortable.I’ve gotten some work done down there too. I usually try something before I talk about it, but I may not be as poor as most people. Unfortunately, more than 60 percent of HIV-positive individuals in the United States are on Medicare or Medicaid.About the butt, it is painful to sit when you have wasting there. When I go to give lectures, a lot of people, ask me, “What kind of chairs will you have? I’m hoping you will have some padded chairs, because it really is painful.”I think whoever comes up with an option for buttock wasting will make a lot of money in this country. Why? Because buttock wasting is related to functional capacity and pain. Anything related to pain can usually get better reimbursement from every insurance company. It may be perceived as cosmetic, but it is a pain-related issue.Something else I wanted to bring up is an option for belly fat (lipohypertrophy). A company in Canada, EMD Serono, is doing research on a growth hormone precursor that has shown some good results: a 13 percent loss in 26 weeks. I don’t think it’s great, but I think it’s OK.It’s called tesamorelin and it’s a product that you inject under the skin in your belly, a lot like growth hormone used to have to be. But the good thing about the drug is that it does not cause, supposedly, side effects such as increased blood sugar, body aches and carpal tunnel syndrome like growth hormone used to. It may, and I think it probably will, get approved in the United States within a year. [For more on tesamorelin, click here.]I think we’re going to see a lot more awareness of lipohypertrophy once this product is approved and marketed to doctors.My concern is that it will probably be conceived as another cosmetic product by Medicare, Medicaid and insurance companies and it may not be covered or reimbursed. Daily injections will probably be very expensive. We’ll probably face the same struggle we’re having right now trying to get insurance companies to pay for facial lipoatrophy options like Sculptra, Radiesse or even Silikon microdroplets. (By the way, you can find more information on my Web site FacialWasting.org. )I would say the rejection rate for reimbursement is probably 90 percent. Only the HMOs [health maintenance organizations] like Kaiser, and sometimes even the VA’s system [U.S. Department of Veterans Affairs], have it in their formulary. So we’re seeing some progress, but not big enough. I’m trying to get experts, third-party payers, activists, the FDA [U.S. Food and Drug Administration] and people from different companies to sit down at a roundtable to come up with a plan regarding how we can change policies to include HIV-related body changes as a clinical condition that requiresreimbursement.Some doctors from Brazil presented a poster at the International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV where they show that the government has implemented a countrywide program that pays for various lipodystrophy (e.g., facial wasting and belly fat accumulation) treatments, such as liposuction. Canada offers some help too, as do The Netherlands and many countries in Europe. So we’re lagging behind. It’s been 11 years since lipodystrophy was first mentioned. It is time to do something about it.Talking to the point of who’s going to pay for these treatments, 62 percent of people in your survey had to pay for it themselves. What was encouraging was that at least 18 percent had insurance to pay for this.Yes, that’s good. It’s actually not as discouraging. Eighteen percent of people found insurance companies to pay for whatever they used. But 62 percent had to pay for it out of their own pocket. And to get your face fixed with Sculptra or Radiesse, if you have moderate to severe facial wasting, it costs around $7,000 to $8,000 easily.Is there a patient assistance program?There’s a patient assistance program. If you make under $40,000 a year, you can get full coverage for the Sculptra, but you still have to pay for the doctor’s fees to inject it in your face. Most doctors charge around $350 to $400 per session and most people require at least four to seven sessions, because it is not a permanent product. It’s a product that builds up slowly in your face and then some people need touchups a year later.For Radiesse, there’s also a patient assistance program. They have a discount for people that make less than $40,000. [Very few people know about Radiesse. Radiesse is another product that has shown very good results. It probably lasts a little longer than Sculptra. You need also at least four sessions for that.So there are two products that are approved in the United States: Sculptra and Radiesse. Both have patient assistance programs and you can find out more online. Sculptra.com has a list of doctors in every ZIP code that have been trained — and Radiesse does too.There’s another option called Silikon microdroplets. It is permanent. It takes also around four sessions, but it’s not covered or reimbursed, because it’s not approved. It’s used off-label.You’ve described the problem and you showed that most people are paying for treatment by themselves. Most people are very concerned about this issue and the survey was presented at an international conference. What’s the next step?I think we need to do a few things. We need to increase awareness that this problem hasn’t gone away. We need to, as I said, set up a brainstorming or roundtable discussion that includes the main players — not only the patient community and activist community, but also doctors, researchers that work in lipodystrophy, people from Medicare and Medicaid, and people from third-party payment companies — to put together some kind of plan.Do we need more data? What are the CPT [current procedural terminology] codes that actually get reimbursement? There are some out there, but they’re not well defined.How can we convince insurance companies that this is not only a cosmetic issue? That this is a clinical issue that impacts quality of life and can result in depression, anxiety and even suicidal thoughts. It even impacts adherence; some studies have shown that adherence tends to drop when people are very afraid of their medications and body changes.I foresee this booklet that we all put together with recommendations that then affects a policy change. I would love to see a bill passed by Congress.With breast cancer, they had to do this too and they passed the bill so that after a mastectomy, breast reconstruction is covered by private and public insurance. I want to see an HIV lipodystrophy reimbursement bill in two years, no longer than that. It will take a lot of work. Hopefully, we have a better administration in Washington, D.C. So that’s what I want to see, but we have to start with some kind of document.A lot of people listening to this have been feeling desperate. And now that they’re hearing this, I imagine they’re feeling very hopeful. Is there anything that people listening to this can do to help you?They need to e-mail me. My e-mail is NelsonVergel@yahoo.comNelsonVergel@gmail.com,NelsonVergel@aol.com. It’s very easy to remember. Just write to me and let me know you want to help. I have to tell you, Bonnie, and I’d say that this is the most disturbing thing that I’ve learned, there’s an 80-20 rule in everything in life. When there is a problem, 80 percent watch while 20 percent do something about it. Eighty percent of people complain and bitch and moan and are depressed, and yet, they don’t think they have the power to make a change.They think they’re too small to make a change. They think their voice doesn’t count. But you know what? In the U.S., writing a letter to Congress (or to your representative or senator) — you could even pick up the phone — if that’s all you did, you did a great thing. [Use these links to contact your representative.]We need to empower people to know that there’s something they can do. I read this book The Tipping Point — we need to get to a tipping point in this problem where there are so many people complaining to their congress people that a bill is passed. I really think we need a bill and I think we can do it.It sounds like you’re energized and you just need people to help you.Yes, I need people to know that they’re not little. They are not small. That they are powerful.Know that without leaving your house, you can do a lot. You can write letters. You can call. You don’t have to leave your house.I think people want concrete things that they can do, because they don’t necessarily know what to do.Yes.You can either write about your case or you can write about a friend’s case. Anybody that can vote for a seat in Congress can complain about something, even if you’re not directly suffering from it. You don’t have to have lipodystrophy, by the way, to help us either. You don’t even have to be HIV positive. So, e-mail me. I’m trying to come up with that formatted letter that people can send to their representatives.This has been really interesting, Nelson. I think this is the beginning of hopefully getting this covered by insurances and getting more attention paid to this issue.Yes, because we only get what we deserve. If we’re not doing enough to change something, then we don’t deserve the change. So I tell people, if you think you really deserve somebody to take care of this for you, you need to get involved, because otherwise you don’t deserve the change. Unfortunately, there are a lot of us that may be tired or depressed. When you’re depressed or have anxiety, as I think a lot of people do in this case, you don’t feel like picking up the phone, you don’t feel like writing a letter. So I understand that too. It’s very hard to be empowered when you’re depressed.It’s particularly hard to feel empowered when you have a stigmatized disease. There are layers of issues that are difficult to deal with.Yes. We haven’t even talked about the other problems related to metabolic disorders, such as bone density loss. Some of us are losing bone density. Some of us have diabetes and insulin resistance. Lipodystrophy is not the only body issue that we face. There are lots of issues internally that are happening: fatty livers and stuff like that. Those are all a part of this syndrome, and should also be discussed.I would suggest that if you haven’t visited the lipoatrophy resource center of The Body, read the information there. It’s great. There are videos. There are patient testimonials. There are resources.FacialWasting.org is one of my Web sites. You can always e-mail me. You can always ask me questions in my nutrition and exercise section of the “Ask the Experts” forum.In addition, I have a group called Poz Health at Yahoo Groups that has 3,000 members that discuss these things too. The Body also has a place you can connect with others, so you are not alone.I tell people, “You are not alone.” If you are home worrying about this, you are not alone. There are maybe 250,000 of us who feel just like you. Connect with those people, network with those people, because you’re not little. You’re powerful. Even if you are feeling depressed, even if you are afraid of disclosing, you still are powerful. We need to get this done.Thank you, Nelson.This transcript has been lightly edited for clarity.Take Nelson’s lipodystrophy survey and share your experience with body shape changes.
View the slides for this survey.
View the comments for this survey.

Reference

  1. Vergel N. Impact of body changes on the quality of life of HIV-positive treatment-experienced patients — an online community-based survey. In: Program and abstracts of the 10th International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV; November 6-8, 2008; London, United Kingdom. Abstract P-67.

Nelson Vergel: Going Beyond Survival

A leading advocate’s thoughts on getting the most out of life
by Jeff BerryIn 1986 Nelson Vergel was only 27 years old when he learned he had HIV. At the time, he wasn’t sure he’d make it to 30, let alone to one day see 50. At the recent Retrovirus conference in Montreal in February, he invited a large group of friends to dinner to share his fiftieth birthday with him.“Being 30 was a big milestone, 40 was a huge one, and now 50…I never even thought, three or four years ago, I was going to be 50,” says Vergel. “It was a big miracle for me, which I was able to enjoy with my friends.”A native of Venezuela and former chemical engineer, Vergel is a 25-year survivor of HIV who has, by necessity, become a leading treatment advocate for people with HIV. Vergel has developed multi-drug resistance (MDR), rendering his HIV essentially resistant to every commercially available HIV drug, but you’d never know it by looking at him. Vergel is the picture of perfect health—fit, toned, and tanned—and even though on disability, probably works harder than most people with a full-time job. And while he claims he’s dealing with it, he says it sometimes makes him feel like he’s not going to live that much longer. “Yet,” he laughs, “I’ve been around forever.”His number one issue right now? “Fatigue,” says Vergel, without hesitation. “People think I’m a hyperactive person, I lecture around the country, and yet when they see me is when I’m at my best. I would say that 80% of the time I’m struggling to get to the point where I have enough energy. I have severe fatigue—it’s cyclic, it comes and goes—but most of the time I have it, and I have to find ways to deal with it.”Vergel, an international speaker on HIV treatments and side effect management, and co-author of the book Built To Survive, says that the people who come to his lectures are aging and long-term survivors who, like himself, experience fatigue, as well as gastrointestinal (GI) problems. “We used to blame Norvir—well, I haven’t taken Norvir for three years, and I still have some diarrhea and bloating, so that’s my number two,” jokes Vergel.“I’m 50 years old, I exercise, I look pretty good, and I try my best to keep my body in shape and not fall apart with lipodystrophy or wasting. But at the same time, I wonder if this is the way a healthy 50-year-old feels. And I’m almost sure that the answer is no.”Vergel says he is on a constant search for the answer to fatigue, through research, reading and consuming HIV information on a daily basis—to the point where it’s almost become a full-time job. Curiously enough, a recent e-mail from HIV advocate Jules Levin, founder of the National AIDS Treatment Advocacy Project (NATAP, see article on page 36), gave Vergel his first glimpse into why some people with HIV are experiencing so much fatigue.“They conducted a study where they performed functional MRIs of the brain, and they found a section of the brain that, when compared to healthy HIV-negative subjects, produced less creatine, which is a metabolite for energy production. So already there’s something going on in our brain that is causing us to have fatigue. Some people also blame, of course, side effects of medications we’re taking. Fatigue is occurring not only in people like me who are dealing with MDR, but it’s also occurring in people with undetectable viral load. So I’m always searching for ‘What is it?’ and ‘How can we treat it?’ ”To treat it, Vergel takes testosterone by injection every two weeks, which keeps his testosterone hormone levels within normal range. He also takes vitamin supplements, including B vitamins, for the reason that B-6 and B-12 deficiencies have been correlated to fatigue.“Another drug that’s becoming popular is Provigil [modafinil],” says Vergel, “It’s actually been studied in people with HIV at Sloan-Kettering in New York, with great results.” He cautions, though, that the drug is metabolized through the same P450 pathway in the liver which many HIV drugs use, and therefore more drug-drug interaction studies are needed. Vergel states, however, that many are now taking Provigil once or twice a day to battle fatigue and depression.“I tell them we have to go beyond getting our T-cells up and getting our viral load down to undetectable.”He said doctors have also been prescribing Adderall, which is a stimulant composed of mixed amphetamine salts, and is thought to work by increasing the amount of norepinephrine and dopamine in the brain. It’s used to treat Attention Deficit Hyperactivity Disorder (ADHD) and narcolepsy (a chronic sleep disorder), but, on the downside, it may become habit-forming.“There’s green tea, and some people take ginseng— I’ve tried that too,” says Vergel. “So there are some of us in this constant search for what we call a pseudo-normal life, either through medications or other things to increase our energy level, because without energy, there’s no life. When I’m tired, not only do I not produce, I don’t write, I don’t help others, I feel depressed, everything collapses. I cannot deal with stress, I don’t want to pay my bills, I’m too tired for that, or to deal with phone calls. So energy and fatigue really, really affect everything in life, even adherence—but we need more studies.”Another big issue, says Vergel, is undiagnosed sleep apnea, which he has a mild case of. He says that some of us wake up more tired, sometimes, than when we went to bed. But according to Vergel, most people are not referred to sleep labs, because many doctors feel that if you’re HIV-positive, you’re expected to feel fatigued. Some individuals may have sleep disorders that are either induced by weight or by things they aren’t even aware of, including side effects from drugs such as Sustiva or Atripla, which may be causing a disruption in their sleep patterns.“It’s really important that all of us, even those who are HIV-negative, deal with the acceptance of aging.”It’s often a struggle, says Vergel, to have a really good quality of life. “I tell people that survival doesn’t mean anything unless you have a good quality of life. I mean, if you’re going to stick around in this world, and yet you’re tired all the time and you’re depressed, your body’s falling apart, and you’re actually not keeping yourself in good health, then what’s the point, really, of surviving? I tell people that we have to go beyond survival.”And it just so happens that going beyond survival is the subject of Vergel’s next book, which he says is two-thirds complete and due out later this year. It’s a compilation of 25 years of what he calls “collective health wisdom,” which is a tremendous amount of information he has learned while moderating his list serve (pozhealth at Yahoo! Groups) as well as from e-mails he’s received from people with HIV all over the world.“People ask me, ‘How do you know so much?’ ” says Vergel. “I’m reading e-mails from other people who’ve tried different things. There’s this collective wisdom that we have as long-term survivors. I think we also know a lot in HIV as we age, more than any other disease, we’ve learned so much and, yes, we keep it to ourselves and it’s time to share that. For instance, what we have learned about hormones, we’ve been using them for 20 years, before anyone else did; what we have learned about exercise; what we have learned about nutrition, supplements, things that help with energy, depression, and sexual function—that’s something nobody wants to talk about.”Vergel says he sees the younger generation of HIV-positives only worrying about taking their pill and moving on with life and while he thinks that’s good, he tells them to go beyond that. “Thinking about HIV all day isn’t very good for you anyway,” says Vergel. “I tell them we have to go beyond getting our T-cells up, getting our viral load down to undetectable—there are other issues that come up. We’re now having concerns about bone density. We seem to be losing bone more than healthy people—are we going to have fractures in a few years? And most of us are taking Truvada or Viread—is it really going to end up affecting our kidneys? Our liver—some of us, like myself, have hepatitis B or C—is cirrhosis going to affect us at the end? I wonder about liver, kidney problems, bone density—and there are bigger issues that I think are coming up in most studies, such as cancer, including anal cancer. They say a little education is needed for doctors and patients about how to diagnose problems that lead to anal cancer; how to catch it early; Pap smears—what does that mean? Should we all be getting that?“People say, ‘You’re so obsessed with health.’ Well, I’m obsessed with life! I want to live a good life! I love my life. I think having a good quality of life so that I can travel and lecture is very important, so I have to be aware of all these things. Are we going to have a shitty older life? I don’t know, I don’t think so. Maybe some of us are, some of us may not—some of us may reach a very healthy 80-year-old age. I think some people forget that, people with HIV, yes, we may have more health issues, but we also go to the doctor 10 times more frequently than any other person out there. We go to the doctor every three months—they check our lipids, they check our blood sugar, our kidneys, our liver, chemistry, all that. Very few people in this country go to the doctor every three months. Most Americans don’t go to the doctor for years, until something happens to them. So yes, we may have some issues, but we keep an eye on them more than anyone else, so that’s a good thing. It makes us a little bit more, I won’t say obsessed, but focused, on numbers than anyone else. Are we sicker than most people? Maybe, maybe not. But we’re definitely being monitored more frequently than any other people in the United States.”Vergel says it breaks his heart that a lot of the younger folks who come to his lectures are completely clueless. “There is this vast amount of information we have as a community, and yet we weren’t able to really package it so that we could say, ‘Here—read this, and hopefully you’ll learn what a lot of us old folks have dealt with. Without scaring them, of course—I don’t want to scare the new, naïve patients because, as I said, they’re going to have it easier than we did. They have drugs that are a lot more friendly and don’t cause lipodystrophy or lipoatrophy, and they don’t have to take high doses of Norvir anymore. But yet, I think they’re going to have issues—they may not be as severe as ours, but there will be things that probably bother them, like CNS problems with Sustiva, some bone density issues, some kidney toxicity eventually, or even cancers that may flare up later in life.”The stigma associated with being HIV-positive is a continuing problem, admits Vergel, which contributes to feelings of loneliness and depression, especially in older adults. While he doesn’t see it going away any time soon, he does believe there’s reason to hope.“Women with HIV who are heterosexual, they’re stigmatized horribly,” he says. Vergel goes on the Hetero Poz Cruise Retreat each year (See News Briefs on page 16), where he speaks to more than 60 heterosexual individuals, and is able to spend the entire week with them on a cruise. “We think we have it bad in the gay community, but we don’t have it as bad as the heterosexual community with HIV, where they’re terrified of how people treat them in the straight world, too. So it’s not only the gays, it’s the straight people with HIV, especially the women, who have a lot of issues around stigma.”In order to be able to start to change people’s perceptions, Vergel believes we need to begin with the younger generation. “I think I’m seeing a trend for them to be more open-minded, more accepting of what’s different. Stigma really is a fear of what’s different. Most people stigmatize because they don’t understand certain things, so they’re afraid of them and they discriminate against them.” Vergel thinks HIV is always going to have some stigma associated with it since many of us acquire it through sexual transmission, and because many are stigmatized for being gay.“But I have seen an openness in that generation—they have straight/gay alliances in most schools, and kids are able to come out earlier than we did. Most of us were in the closet until we were 20-something, so I really think the world’s going to be a better place in 10 or 15 years, when a lot of the older generation that has grown up with a lot of stigma, misconceptions, racism, homophobia, and HIV-phobia are going to be moving a ways back. We have to generate a lot of programs at the college level, the high school level, where we can teach these kids, hey, it’s okay, these people are not evil, HIV doesn’t discriminate, it’s just a virus. I think we’re going to get there, I really think so.“I may not be alive to see the day,” says Vergel, “But I think the next generation that comes through is going to be more accepting of people who are different, who are not what we call the ‘norm.’ ”Vergel says he’s very out about his own HIV status and being gay, and that even being an immigrant from South America with a Spanish accent hasn’t caused him to suffer as much stigma as most. “Is it because I am very out about it and I feel actually proud of all the differences I have? Or maybe it’s the fact that I live in a more isolated, bubble kind of world, that doesn’t expose me to people who are really anti-HIV, anti-gay, anti-female, anti-immigrant, and all the other ‘anti’ things we have in the world,” laughs Vergel.One final thing that Vergel stresses is that it’s really important that all of us, even those who are HIV-negative, deal with the acceptance of aging. “You know, when we look at ourselves in the mirror, we’re not looking like we did 20 years ago. Some of us may still be single and looking for dates, or sex, and some of us may be getting rejected because we are older. For some of us who have been positive for a long time and getting older, we’re not really preparing ourselves. I think we’re in pseudo-denial of the fact that we’re ever going to get a day older because we were not going to be around for that long, or so we thought.”While Vergel says that we’re never going to be that person we were a few years ago, especially with concerns around lipoatrophy and facial wasting, we have to find ways to love ourselves. “Think of the things we’ve gone through and yet, we’re here, most of us are not falling apart, having productive lives. We’re survivors of a horrible thing that happened, and is still happening, and often we have friends and lovers die around us, and we have to take care of ourselves.”Vergel was recently involved in an anti-stigma campaign in Houston, and says that early next year they will be holding what he believes to be the area’s first conference focusing specifically on HIV and aging, and bringing in experts to talk about the physical and mental aspects of aging with HIV. “It’s hard,” explains Vergel. “I don’t want to preach about it, because I deal with it too, but somebody needs to look at that. I’d like to see a study, a cohort, observing people who are aging with HIV and what our main issues are.“I think it’s time.”For more information on Nelson Vergel and PoWeR, visit www.powerusa.orgFor more information on the Hetero Poz Cruise Retreat, see page 16 or visitwww.positivecruise.com.