Review of aTalk by Nelson Vergel: “Survivor Wisdom: Advances in Managing Side Effects, Living Well, and Aging with HIV” – New York City, November 9, 2010

Thanks to the New York Buyers’ Club for sponsoring my lecture in New York. Here is their review:

http://nybc.wordpress.com/2010/11/17/nelson-vergel-survivor-wisdom/

Fw: Hot Topics at The Body’s “Ask the Experts” Forums

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From: “News at The Body” <update@news.thebody.com>
Date: 16 Nov 2010 14:10:24 -0500
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Subject: Hot Topics at The Body’s “Ask the Experts” Forums

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November 16, 2010 Visit the Forums “Hot Topics” Library Change/Update Subscription



LIVING WITH HIV/AIDS
 Any Tips to Avoid Weight Gain on HIV Meds?
I just started taking Sustiva (efavirenz, Stocrin) and Truvada (tenofovir/FTC) and am reading everywhere about people putting on weight once they start HIV meds. I’m terrified of getting fat. I’m active at work all day and I eat well already. What else could help minimize weight gain?

 Is It Hard to Get Health Insurance Once You’ve Been Diagnosed?
My boyfriend and I were just diagnosed with HIV a few months ago. I have health insurance, which covers a good portion of my bills. My boyfriend, however, does not. Can he still get health insurance now that he has HIV?

More Questions About Living With HIV/AIDS:

BODY SHAPE CHANGES & HIV/AIDS
 Hooray for Belly Fat Drug Approval! Now What Are the Next Steps?
So Egrifta (tesamorelin) was approved by the FDA (U.S. Food and Drug Administration) last week. When will it be available?


 Does Sculptra Stop Working After Long-Term Use?
It’s been about six or seven years since my original treatment with Sculptra (poly-L-lactic acid, New-Fill). It worked great for me — until about two years ago. I was used to getting yearly touch-ups but I found I needed them up to once a month to see any effect. It eventually became clear even to my doctor that my body was not longer reacting to Sculptra. Have you heard of other long-term users becoming immune to the effects of Sculptra?
egrifta approved!

This Month in HIVOn Nov. 10, Egrifta (tesamorelin) became the first drug approved in the U.S. to treat unusual fat gain, or lipohypertrophy, in people with HIV. In our latest episode of This Month in HIV, we talk with noted HIV researcher Daniel Berger, M.D., about how Egrifta works, who should take it, and what else we know to date about the treatment of lipohypertrophy.


BEYOND HIV/AIDS MEDICATIONS
 Why’d My Doc Advise Me to Go Off Calcium Supplements?
About a year ago my doctor recommended I start taking calcium supplements along with vitamin D, but a few weeks ago he told me to immediately stop taking calcium. He said some recent studies show that the way current preparations of calcium distribute may bunch up in people’s blood vessels and constrict blood flow. Do you know anything about this?

 Can My Child Take Fish Oil With His HIV Meds?
Would it be OK for my child to take a fish oil capsule along with his daily multivitamin? Will this interfere with his HIV meds?

More Beyond HIV/AIDS Medications Questions:

HIV/AIDS TREATMENT & SIDE EFFECTS
 Is It Better to Take a Partial Dose of HIV Meds or No Dose At All?
I take Isentress (raltegravir), Kaletra (lopinavir/ritonavir) and Viread (tenofovir) in the morning and at night it’s Isentress and Kaletra alone. I recently took my two evening Kaletra pills and when I reached for my Isentress, there was none left. I threw up the Kaletra, thinking maybe it would be better not to have any meds in my body in order to avoid developing drug resistance by only taking one med. Was this the right thing to do?

 What to Do About Sleep Disturbances on Atripla?
I have been on Atripla (efavirenz/tenofovir/FTC) for about five months now and it’s working well against HIV, but my sleep pattern is getting worse. I usually wake up after two to three hours of sleep. Even when I manage to sleep through the night, it’s a very light sleep and I don’t wake up feeling refreshed. Do you think the sleep disturbance will go away? Should I consider switching meds?

 Are There Safer Meds for My HIV-Positive Pregnant Partner?
My girlfriend and I are HIV positive. Her CD4 count is 480 and mine is 720. We don’t take HIV meds at the moment, but she’s 17 weeks pregnant. She was told at the PMTCT (preventing mother-to-child transmission) clinic that she will start treatment at 28 weeks with Combivir (AZT/3TC) and Viramune (nevirapine). I know they are the preferred choice, but they are more toxic than the newer drugs. Can you suggest a safer alternative?

More Questions About HIV/AIDS Treatment & Side Effects:

world aids day 2010: what's there to do, learn & think?

World AIDS Day, Dec. 1, is nearly upon us — and TheBody.com is getting a head start! In our annual World AIDS Day section you’ll find:


OTHER HEALTH ISSUES & HIV/AIDS
 Stiffness in Hips: Could It Be Inflammation?
I’m HIV positive and take Atripla (efavirenz/tenofovir/FTC) daily. I have a recurring problem with stiffness in my hip and the upper area of my buttocks. I’ve been to a chiropractor and massage therapist, which helped some. My doctor prescribed steroids and muscle relaxers, which also helped for a couple weeks. I do stretches and am a very active person. Could this be some form of infection causing inflammation in that area?

 Extreme Sensitivity to Sunlight: What Are My Options?
A year prior to going on HIV meds, I started getting red welts on my face. My CD4 count then was between 300 and 400. This symptom became more problematic as my CD4 count went down. I thought it would improve along with my CD4 count when I started on Emtriva (emtricitabine, FTC), Norvir (ritonavir), Reyataz (atazanavir) and Viread (tenofovir); but instead, the skin issue spread to my entire body. I figured out that it was caused by exposure to daylight. Numerous treatments have had no positive effect, and I’ve become a prisoner in my own home. What else can I do?

More Questions About Other Health Issues & HIV/AIDS:

UNDERSTANDING HIV/AIDS LABS
 Virus Has Become Resistant to My Meds: Is My Viral Load Too Low for a Switch?
My recent genotype test showed my virus has become resistant to Atripla (efavirenz/tenofovir/FTC). My viral load has been undetectable, but my last labs show it at about 1,000. Is this viral load too low to warrant changing meds?

 Why Are My CD4 Counts Zigzagging?
Last November my CD4 count was 764, my CD4 percentage was 31 and my viral load was undetectable. Then in May my CD4 count jumped to 903, but my percentage fell to 29. Now this month, my CD4 count has dropped to 745 and my percentage has gone up to 40. I also had an upper respiratory infection, and flu and pneumonia vaccines, in the weeks before those last lab tests were done. Should I be concerned about these fluctuations?
Connect With Others How Do You Tell People You’re HIV Positive — and Face Potential Rejection?
(A recent post from the "Gay Men" board)

I recently started going out with someone and we got along really well. I haven’t been able to tell them that I’m positive. I don’t know how to tell someone that I feel so ashamed, that I’m less than human because of it. I feel as though the world feels I shouldn’t be here. Because of my status I HAVE to tell people that I am interested in that I am positive. As soon as I tell them they shut down and want nothing to do with me. So how do I tell people? —  magis333

Click here to join this discussion, or to start your own!

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HIV TESTING & TRANSMISSION
 For How Long Should I Delay HIV Testing After a Flu Shot?
A nurse practitioner at an HIV clinic told me that flu shots can cause false-positive results on HIV tests. Should I wait for a while after having a flu shot before testing for HIV? If so, for how long?

 Two Affairs, Two HIV-Positive Diagnoses: Should We Worry About Who Infected Whom?
In May my partner and I both had unprotected sex outside our relationship while still having unprotected sex with each other. He found out he was HIV positive in July, but did not tell me until last month. I too tested positive. We both informed our lovers but they tested negative. Accusations are flying back and forth as to who infected whom. Is there any way to tell?

More Questions About HIV Testing & Transmission:

STRANGE BUT TRUE
 The Worst Part of Waking Up: HIV in Your Cup?
I’m afraid HIV-positive blood from a syringe was put into my coffee before I drank it. Can HIV transmission happen this way?

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Activist Central
 Demand That the CDC Reach Out to Transgender Youth

 AIDS Alliance Asks You to Get Informed/ Involved in the Effort to Maintain Funding for School-Based HIV Prevention (DASH)

 Barbara Jordan Health Policy Scholars Program Applications Due Friday, Dec. 3, 2010

 Call on Peruvian Authorities for Justice in Murder of HIV/AIDS & Gay Activist

Egrifta Gets Approved for the Treatment of Abdominal Fat Accumulation in HIV- Activists Ask Serono to Price it Affordably

Fat busting, but at what cost?: http://blogs.poz.com/tim/archives/2010/11/fat_busting_but_at_w.html 




Press Release from Serono:

http://multivu.prnewswire.com/mnr/emdserono/47019/

Here’s a link to the full prescribing info via Serono’s website:

http://www.emdserono.com/cmg.emdserono_us/en/images/FULL%20PRESCRIBING%20INFORMATION_tcm115_59676.pdf?Version=

A Closer Look at Egrifta, a Newly Approved Treatment for HIV-Associated Belly Fat Gain (Lipohypertrophy)

http://www.thebody.com/content/art59340.html

For physicians interested in learning more about EGRIFTA™ and
the process for prescribing EGRIFTA™, call the AXIS Center
toll-free at 877-714-AXIS (2947).

Egrifta.com will have more information soon about patient assistance and other important issues

Briefing Information for the May 27, 2010 Meeting of the Endocrinologic and Metabolic Drugs Advisory Committee

http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/EndocrinologicandMetabolicDrugsAdvisoryCommittee/UCM213260.pdf

LETTER SENT BY ACTIVISTS TO SERONO:

David L. Stern
Executive Vice President
Endocrinology
EMD Serono Inc.
Rockland, MA
Dear David,
Thank you for taking the time to meet with the Fair Pricing Coalition (FPC) on August 9, 2010 regarding the pricing of Egrifta (tesamorelin). We believe that Egrifta, if approved, will be beneficial to many people with HIV-associated lipohypertrophy by improving their self-image, quality of life and adherence to their HIV treatment regimens. However, Egrifta only has a minimal effect on fat deposition with only modest waist circumference changes described.  Further, there is no accompanying mortality data that might convince patients and providers Egrifta was actually worth an exorbitant price.  Moreover, unlike Serostim, Egrifta must be used continuously to retain any effect.  This means continuous drug costs and continuous profits.  Surely, the ultimate price of the drug should be considered in light of these circumstances.
It is for these reasons that we feel strongly that Egrifta must be priced reasonably and affordably to allow the widest access possible for the greatest number of people. While we understand and appreciate the pricing considerations that EMD Serono put forth at the meeting, we also know that the reaction to the final price by patients and their advocates, as well as payers and providers must be favorable in order for this drug to widely accepted, desired by patients and covered by payers.  Moreover, Egrifta is the first drug of its kind for hypertrophy.  Thus, any drugs that follow Egrifta will undoubtedly be priced higher than Egrifta, resulting in a continued upward spiral of drug costs that are healthcare system cannot absorb.
We hope that EMD Serono will consider the concerns we raised at the meeting before determining the final price of Egrifta. As we stated at the meeting, we hope to be able to support the use of Egrifta and your pricing decision.  We will do so only if we believe Egrifta it is priced within a reasonable range.
We look forward to continued dialogue on this matter and hope it will not be necessary to publicly denounce EMD Serono and the final price of Egrifta .
If you have any questions or concerns, please do not hesitate to contact me by phone or e-mail.
Very truly yours,
Jeff Berry
Fair Pricing Coalition

Risk of MI May Go Up With Calcium Supplements

Risk of MI May Go Up With Calcium Supplements

MedPage Today
Published: July 29, 2010

Effect of calcium supplements on risk of myocardial infarction and …

Jul 29, 2010 … Recently, the Women’s Health Initiative reported that calcium and vitamin D had no effect on the risk of coronary heart disease or stroke.41 …
www.natap.org/2010/newsUpdates/081110_05.htm

Calcium supplements boost heart-attack risk: Meta-analysis

Jul 29, 2010 … Calcium supplements boost heart-attack risk: Meta-analysis. “Schindler also said that the real risk of MI appeared to be in people who took …ww.natap.org/2010/newsUpdates/080610_21.htm

Calcium supplementation appears to increase the risk of myocardial infarction, a meta-analysis showed.

Among studies of patients with or at risk for osteoporosis, those who took calcium supplements were about 30% more likely to have an MI than those who did not, Ian Reid, MD, of the University of Auckland in New Zealand, and colleagues reported online in BMJ.

Among randomized controlled trials with patient-level data, the hazard ratio for MI with supplementation was 1.31 (95% CI 1.02 to 1.67). Among those with trial-level data, the relative risk was 1.27 (95% CI 1.01 to 1.59).

“As calcium supplements are widely used, these modest increases in risk of cardiovascular disease might translate into a large burden of disease in the population,” the researchers wrote. “A reassessment of the role of calcium supplements in the management of osteoporosis is warranted.”
Action Points

* Explain to interested patients that none of the studies included in the meta-analysis was designed to evaluate the cardiovascular risk associated with calcium supplementation.

Commenting on the study, Suzanne Steinbaum, DO, a cardiologist at Lenox Hill Hospital in New York City, said in a prepared statement that “this study helps to remind us that ‘one size does not fit all,’ even in recommending supplements and preventive care.”

“For patients who are at risk for heart disease, with multiple risk factors, or a strong family history, perhaps calcium supplementation should not be considered,” she said.

Murray Favus, MD, an endocrinologist at the University of Chicago, said in an e-mail to MedPage Today and ABC News, “I am sufficiently concerned to advise those with high calcium supplement intake to limit calcium supplement use in favor of dietary sources until the risk of supplements can be sorted out.”

Reid and his colleagues analyzed data from 11 randomized controlled trials that evaluated the use of calcium supplementation (at least 500 mg/day). They excluded studies that also administered vitamin D, which has been shown to have a cardiac benefit, in order to get a clearer picture of calcium’s effect on the heart.

None of the individual studies was designed to assess the risk of cardiovascular events.

All 11 studies — with a total of 11,921 participants and a mean duration of four years — had trial level data; five — with 8,151 total participants and a median follow-up of 3.6 years — had patient-level data.

Separate pooled analyses of patient-level and trial-level data yielded similar results, with about a 30% increased risk of MI with calcium supplementation.

None of the individual trials found a significantly increased risk, although six had nonsignificant trends in that direction.

In the analysis of patient-level data, calcium supplementation was associated with an increased risk of MI in participants who had a dietary calcium intake above the median of 805 mg/day, but not in those with lower dietary intake (P=0.01 for the interaction).

Previous studies evaluating dietary calcium intake showed a reduced cardiovascular risk with greater consumption. The difference between those results and the findings of the current study suggests “that cardiovascular risks from high calcium intake might be restricted to use of calcium supplements,” according to the researchers.

It is possible that calcium supplements elevate cardiovascular risk by increasing serum calcium levels, which have been associated with higher MI rates in observational studies, they noted.

Other possible mechanisms include an increase in vascular calcification or coagulability or altered vascular flow.

“Calcium supplements, given alone, improve bone mineral density, but they are ineffective in reducing the risk of fractures and might even increase risk, they might increase the risk of cardiovascular events, and they do not reduce mortality,” John Cleland, MD, of the University of Hull in England, and colleagues wrote in an editorial published with the study.

“[Supplements] seem to be unnecessary in adults with an adequate diet,” they added. “Given the uncertain benefits of calcium supplements, any level of risk is unwarranted.”

Considering the available evidence, the editorialists wrote, “patients with osteoporosis should generally not be treated with calcium supplements, either alone or combined with vitamin D, unless they are also receiving an effective treatment for osteoporosis for a recognized indication.”

The study authors noted that the analysis was limited in that it excluded trials in which calcium supplements were coadministered with vitamin D.

In addition, they noted, only two of the trials had data adjudicated by blinded trial investigators and seven — which accounted for 15% of the participants — had incomplete or missing data.

Noting the inherent limitations of a meta-analysis, Stephen Richardson, MD, an endocrinologist at NYU Langone Medical Center in New York City, said in an e-mail that a prospective study is needed to definitively assess the cardiovascular risk with calcium supplementation.

The meta-analysis “may temper our enthusiasm for calcium supplementation in low-risk populations,” he said, “but patients with high risk for fractures will continue to take calcium supplements.”

The analysis was funded by the Health Research Council of New Zealand and the University of Auckland School of Medicine Foundation. One of the study authors is funded by a career scientist award of the chief scientist office of the Scottish government health directorates. The Health Services Research Unit is funded by the chief scientist office of the Scottish government health directorates.

Reid has received research support from and acted as a consultant for Fonterra. He and three of his co-authors had study drugs for clinical trials of calcium supplementation supplied by Wyeth, Mission Pharmacal, Shire Pharmaceuticals, and Nycomed.

The editorialists reported that they had no conflicts of interest.

This article was developed in collaboration with ABC News.

Primary source: BMJ
Source reference:
Bolland M, et al “Effect of calcium supplements on risk of myocardial infarction and cardiovascular events: meta-analysis” BMJ 2010; DOI: 10.1136/bmj.c3691.

Additional source: BMJ
Source reference:
Cleland J, et al “Calcium supplements in people with osteoporosis” BMJ 2010; DOI: 10.1136/bmj.c3691.

Vitamin D Deficiency in EuroSIDA Linked to All-Cause Mortality and AIDS

Vitamin D Deficiency in EuroSIDA Linked to All-Cause Mortality and AIDS

Vitamin D Deficiency in EuroSIDA Linked to All-Cause Mortality and AIDS

Tenth International Congress on Drug Therapy in HIV Infection, November 7-11, 2010, Glasgow

Mark Mascolini

Analyzing almost 2000 cohort members, EuroSIDA investigators found a higher risk of a new AIDS diagnosis or death from any cause in people with lower vitamin D levels [1]. These associations held in analyses corrected for an array prognostic factors in people with HIV.

EuroSIDA researchers randomly selected 2000 cohort members older than 16 who had at least 1 month of follow-up and CD4 and viral load measurements within 6 months. A single laboratory measured 25OHD levels in 1985 samples, and the investigators divided them by level into lower, middle, and upper thirds (tertiles). The low tertile (25OHD below 12 ng/mL) included 714 people, the middle tertile (12.1 to 20 ng/mL) included 622, and the high tertile (above 20 ng/mL) included 649.

Median age was similar across tertiles (39.3 T1, 38.1 T2, and 38.0 T3, P = 0.19), as were CD4 count (356 T1, 376 T2, and 360 T3, P = 0.13) and viral load (2.5 log T1, 2.6 log T2, and 2.6 log T3, P = 0.36). Median month of sample collection was February 2002 in T1, November 2001 in T2, and September 1999 in T3 (P < 0.0001). The low tertile had a significantly lower proportion of whites (81.9% T1, 87.8% T2, and 90.6% T3, P < 0.001) and a significantly lower proportion of people infected during sex between men (35.3% T1, 44.4% T2, and 45.9% T3, P = 0.0022). Multivariate analysis identified several factors independently associated with 25OHD levels in the low tertile, including nonwhite race (odds ratio [OR] 1.60, 95% confidence interval [CI] 1.19 to 2.15, P = 0.0017), each additional 10 years of age (OR 1.12, 95% CI 1.01 to 1.24, P = 0.035), sample collection during spring (when vitamin D levels would be low after scanty winter sun exposure), and living in central or northern Europe rather than sunnier southern Europe. Compared with cohort members infected during sex between men, those infected during heterosexual sex had a 51% higher risk of being in the lowest tertile (OR 1.51, 95% CI 1.18 to 1.92, P = 0.001) and those infected by injecting drugs had a 65% higher risk (OR 1.65, 95% CI 1.26 to 2.15, P = 0.0003). A multivariate model devised to predict the impact on low D levels on risk of progression to AIDS, non-AIDS disease, or death considered gender, ethnic origin, HIV risk group, region of Europe, HBV and HCV status, prior AIDS, antiretroviral exposure, age, CD4 count, nadir CD4 count, viral load, date of vitamin D sampling, season of sampling, and date of joining EuroSIDA. Compared with people in the low tertile, people in the middle and high tertile had an independently lower risk of death from any cause or new AIDS (but not new non-AIDS diseases) at the following incidence rate ratio (IRR): New AIDS diagnosis
— Middle tertile: IRR 0.58, P = 0.0086
— High tertile: IRR 0.61, P = 0.020

Death from any cause
— Middle tertile: IRR 0.68, P = 0045
— High tertile: IRR 0.56, P = 0.0039

During follow-up, 48 people died from an AIDS-related cause and 112 died from non-AIDS causes. Repeating the multivariate analysis according to cause of death, the researchers found that people in the highest tertile had a 40% lower risk of a non-AIDS death than people in the lowest tertile (IRR 0.60, 95% CI 0.37 to 0.098, P = 0.043). But being in the high tertile had no significant impact on AIDS death. In this analysis, being in the middle tertile did not significantly affect the risk of AIDS death or non-AIDS death.

The EuroSIDA investigators noted that their analysis is limited by its observational nature and single vitamin D measurement, but a longitudinal study is under way. They called for “intervention studies on correction of vitamin D deficiency . . . to gain a better understanding of the pathophysioloigcal mechanisms behind these findings.”

Reference
1. Viard JP, Souberbielle JC, Kirk O, et al. Vitamin D and clinical disease progression in HIV infection: results from the EuroSIDA study. Tenth International Congress on Drug Therapy in HIV Infection. November 7-11, 2010. Glasgow. Abstract O413.

Egrifta was approved today for HIV Lipodystrophy related visceral fat

Now, let’s see if insurance companies and Medicare Part D will pay for it!

http://www.google.com/#sclient=psy&hl=en&site=&source=hp&q=egrifta+fda+approval&aq=1&aqi=g6g-m4&aql=&oq=egrifta&gs_rfai=Ciodne2TbTMJJh5rMBIOLlZwLAAAAqgQFT9BHaG0&fp=e101ff708d439543

Fw: We need you to do something for the cure.

Sent via BlackBerry

From: “AIDS Policy Project” <kate@aidspolicyproject.org>
Sender: “AIDS Policy Project” <kate=aidspolicyproject.org@mail37.us2.mcsv.net>
Date: Tue, 9 Nov 2010 14:19:06 -0500
To: <nelsonvergel@aol.com>
ReplyTo: “AIDS Policy Project” <kate@aidspolicyproject.org>
Subject: We need you to do something for the cure.
Email not displaying correctly? View it in your browser.
AIDS Policy Project logo
From Your Friends at the AIDS Policy Project:

THE FRANCIS COLLINS PROJECT

500 LETTERS CALLING FOR MORE MONEY FOR A CURE. BEFORE DECEMBER 1.

Please forward this message, but only after you’ve mailed off at least one letter.

Issue: The pace of AIDS cure research is accelerating quickly now. The case of the Berlin Patient, functionally cured in 2008, was an important proof of concept and a springboard for major follow-up research. But there is not enough money to fund the research needed to propel us to a cure appropriate for millions of people. The National Institutes of Health, the leading funder for cure research worldwide, spends only 3% of its AIDS research money on cure research. Some
researchers have even considered leaving the field (the field of finding a cure for AIDS) for lack of resources. The NIH spends about $60 million dollars per year on a cure, leaving many important projects unfunded or underfunded. Because it is parsing out relatively small amounts of money, the NIH tends to reward conservative approaches and established researchers, and not risk money on young researchers or new ideas.

The Plan: Before World AIDS Day, we want people from all over the world to write a total of at least 500 letters to Francis Collins, MD PhD, the Director of the National Institutes of Health, calling on him to increase AIDS cure research funding to $240 million per year, increasing AIDS cure research to
about 12% of the AIDS research budget. We want a mixture of handwritten letters in his mailbox and emailed letters. This is Phase I. After December 1, stay tuned for Phase II.

Why Francis Collins? Because he's in charge, he has spending discretion, and he has a broad view of research not just at NIAID but elsewhere in the NIH that may help this goal.

Background: The National Institutes of Health started tracking how much money it was spending on AIDS cure research in 2010 after a five-month campaign by the AIDS Policy Project. Again, the NIH spends only 3% percent of its AIDS research budget on research that would lead directly to a cure for AIDS. That includes research that would lead either a functional cure, in which the body controls the AIDS virus without drugs, or a sterilizing cure, in which HIV is completely eradicated from the body. For more information on the search for a cure, see our report, “AIDS Cure Research for Everyone,” which is downloadable from our website at http://www.AIDSPolicyProject.org

We want to count the letters, so we can all have the satisfaction of knowing how we’re doing. SO: When you physically mail a letter, send us a note to info@aidspolicyproject.org, and we will add your letter to the thermometer on our web site tracking the number of letters we have sent toward our goal. You can even email us the text if you want. If you email Francis Collins a letter, please BCC us and we can add it to the count.

Tip: It’s easy to do this in groups. Please consider bringing writing paper and stamps to your next meeting (class, knitting circle, political meeting, church group, craft show, bar, etc.). If you have organized a group to write letters, let us know who you are and how many letters were actually sent (not just written). We’ll keep count under your name. It only counts when they are mailed or emailed.

Prize! The person responsible for organizing the biggest number of successfully delivered letters to Francis Collins will receive a special mystery prize from the AIDS Policy Project. We promise it will be fun and worth getting: We don’t lack imagination. Can we do 500 letters? 1,000? Let’s find out.

Until the cure is more than a slogan,

The AIDS Policy Project
www.AIDSPolicyProject.org
Info@AIDSPolicyProject.org

TALKING POINTS FOR YOUR LETTER:

(#1 is strongly recommended; the rest are up to you, really. Please be polite. Humor is ok.)

1. I am writing to ask you to make a cure for AIDS a greater funding priority at the NIH by allocating $240 million per year to science that would lead directly to a cure. We truly applaud the NIH’s innovative AIDS cure programs, but they are underpowered because they are underfunded. We ask you to immediately increase the funding for AIDS research that would lead directly to a cure from $60 million (or about 3% of your AIDS research budget) to $240 million.

2. We need you to fund innovation, not make prudent investments. We are at a pivotal point in AIDS cure research, and the NIH is not leading the way. There is exciting research following up on the Berlin Patient case and new potential therapies such as vorinostat, the PD-1 inhibitor that is already on the market for lymphoma patients. We need you to create fertile ground for innovation so that we can achieve a cure suitable for millions of people.

3. At this writing, leading cure researchers are forced to compete with each other for funding under NIAID’s new Martin Delaney Collaborative because there isn’t enough money for more than a couple. This program, only $8 million total, should be ten times as big. In contrast, a single disease team grant from the California stem cell agency is as high as $20 million. Two such grants have already been awarded for HIV cure research in California.

4. The plain fact is that the NIH is doing AIDS research for the world. This world is unable to treat more than about 20% of people with HIV in developing countries who need medicine. The rest of them, the vast majority of 33 million people, are dying, with a lifespan after diagnosis of about two years after diagnosis. Again, we urge you to increase NIH funding for a cure.

5. Explain why you personally want a cure for AIDS. No platitudes allowed.
Francis Collins' Address:
Francis Collins, MD, PhD/Director, National Institutes of Health/9000 Rockville Pike/Bethesda,
Maryland 20892
Email: collinsf@mail.nih.gov

* Don’t forget to date the letter and include your full name and address 🙂

The AIDS Policy Project • 5120 Walton Avenue, Philadelphia, PA 19143
tel: +1 215.939.7852 • www.AIDSPolicyProject.org
11/2010

SAMPLE LETTER

November __, 2010

Francis Collins, MD, PhD
Director, National Institutes of Health
9000 Rockville Pike
Bethesda, Maryland 20892

Dear Dr. Collins:

I am writing to ask you to make a cure for AIDS a greater funding priority at the NIH. We truly applaud the NIH’s innovative AIDS cure programs, but they are underpowered because they are underfunded.

We ask you to immediately increase the funding for AIDS research that would lead directly to a cure from $60 million (or about 3% of your AIDS research budget) to $240 million.

We are at a pivotal point in AIDS cure research, and the NIH is not leading the way. Let’s assume for a moment that the reason the NIH is not taking the lead in adequately funding AIDS cure research is because, as NIAID officials have publicly claimed, the science is uninteresting—that the ideas are bad. Is the NIH taking the global lead in generating new ideas? If all the research ideas for breast cancer were terrible, would the NIH stop doing breast cancer research? Of course not. You are the National Institutes of Health, not the National Institutes of Grants. Finding ways to generate and support new ideas should be part of your mission.

In fact, many people disagree that the research is lacking. What about the mouse experiments at USC that are following up on the Berlin Patient case, or vorinostat, the PD-1 inhibitor that is already on the market for lymphoma patients?

At this writing, leading cure researchers are forced to compete with each other for funding under NIAID’s new Martin Delaney Collaborative because there isn’t enough money for them all. The program, only $8 million total, should be ten times as big. In contrast, a single grant from the California stem cell agency is $15 million.

Here are our questions: Are there stem cell transplant conditioning regimens that would make cell-based therapies safer? If a stem cell transplant costs $100,000, and a patient is spending $30,000 per year on drugs, is it too expensive? With the epidemic expanding and treatment in developing countries cut, can we afford not to properly fund the search for a cure?

The plain fact is that the NIH is doing AIDS research for the world. This world is unable to treat more than about 20% of people with HIV in developing countries who need medicine. The rest of them, the vast majority of 33 million people, are dying, with a lifespan after diagnosis of about two years. Again, we urge you to increase NIH funding for a cure.

Sincerely,

Your name and address

[Thanks. We can do this!-APP]
 

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From: “News at The Body” <update@news.thebody.com>
Date: 09 Nov 2010 12:08:00 -0500
To: <nelsonvergel@yahoo.com>
ReplyTo: “News at The Body” <update@news.thebody.com>
Subject: Hot Topics at The Body’s “Ask the Experts” Forums

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November 9, 2010 Visit the Forums “Hot Topics” Library Change/Update Subscription



BEYOND HIV/AIDS MEDICATIONS
 What More Can I Do to Lower My Cholesterol?
Even though I’m on a limited income, I’ve been able to get creative about keeping healthy — including getting a physical education student at a local university to be my personal trainer for a low rate! I also eat a well-balanced diet and take multivitamins, extra vitamin D, vitamin E, vitamin C, zinc and Lovaza (an omega-3 product), and I’ll be starting selenium soon. Despite all this, my level of “bad” cholesterol is still 380. Is there anything else should I be taking?

 Will I Still Feel Good Once My Testosterone Level Has Balanced Out?
I’ve been HIV positive for 32 years. My new doctor recently found that my testosterone levels were in the high 1,500s — the level for someone in my age range (50ish) should be around 800 to 850. My doc ordered me to switch from injecting Depo-Testosterone once every four days to once a week. Meanwhile, my urologist has started me on a small-dose, daily Cialis (tadalafil) regimen. I now have no trouble getting an erection, and I also have a great deal of energy. Will this feeling last? Is it a temporary reaction to the change in my poorly monitored testosterone level, or is it the Cialis? Speaking of which, where can I get Cialis at reduced cost?
LIVING WITH HIV/AIDS
 COBRA Has Run Its Course: How Can I Get My Meds?
I recently exhausted my 18 months of coverage with my previous employer under COBRA. I started HIV treatment six years ago and have responded very well, only ever missing one dose. How will I get my meds now that I don’t have COBRA coverage?


 Could My Friend’s Death Have Been Avoided?
My friend was diagnosed with HIV in 2003. Around 2008, he stopped taking his meds and didn’t visit his doctor regularly. In 2009 he developed shingles. Finally, last January he developed pneumonia, which led to acute respiratory stress syndrome and, I’m sorry to say, it claimed his life. Had he taken his meds like he was supposed to, could this have been prevented? What if he’d seen a doctor who specialized in HIV/AIDS?

Also Worth Noting: Visual AIDS
Image from the November 2010 Visual AIDS Web Gallery
“Album (to the Memory),” 1995; Stephen Andrews

Visit the November 2010 Visual AIDS Web Gallery to view our latest collection of art by HIV-positive artists! This month’s gallery, entitled "Treat My Words," is curated by John Chaich.

BODY SHAPE CHANGES & HIV/AIDS
 Will I Still Be Able to Take Egrifta Once It’s Approved?
A few years ago I was in a clinical trial for Egrifta (tesamorelin), the lipodystrophy treatment now awaiting FDA (U.S. Food and Drug Administration) approval, and saw excellent results. However, I was recently diagnosed with prostate cancer. Once Egrifta is approved, will I now be ineligible to take it?

 What Can I Do About My Recent Weight Gain?
I am a 6-foot-2-inch-tall man and I currently weight 191 pounds. I’ve gained 22 pounds in the past two years since starting Atripla (efavirenz/tenofovir/FTC). Is it the medication that’s causing issues with my weight? What can I do?

More Questions About Body Shape Changes & HIV/AIDS:

MIXED-STATUS COUPLES
 How Often Does My Wife Need to Be Tested to Confirm Her HIV Status?
My wife is worried sick that she’s HIV positive. One week after I was diagnosed she got tested and her test came back negative. We hadn’t had sex since two months prior to my diagnosis. When should she be tested again?
HIV/AIDS TREATMENT & SIDE EFFECTS
 Is There a Regimen That Would Be Easier to Take With My Late-Night Work Shifts?
I was diagnosed HIV positive in 2008 with a CD4 count of 250 and viral load of 150,000. I was quickly started on Atripla (efavirenz/tenofovir/FTC) and responded well. However, when I have to work overnight I take my meds at 11 p.m., which is when I experience the most side effects. Is there a regimen I can switch to that will allow me to work overnight with minimal side effects?

 Pains in My Feet: Is It Neuropathy?
I started taking Epivir (lamivudine, 3TC), Sustiva (efavirenz, Stocrin) and Viread (tenofovir) in November 2008. Ever since then I’ve had pains in my feet, and it seems as if the pain is getting worse every day. I talked to my doctor and he thinks it’s a side effect of my HIV meds. What do you think?

 What Can I Do About Diarrhea?
I’ve been on Atripla (efavirenz/tenofovir/FTC) for a year. It’s my first HIV med. Everything is great — except for persistent diarrhea, which has been going on since the beginning. What can I do about it?

More Questions About HIV/AIDS Treatment & Side Effects:

Connect With Others My Boyfriend Said He Loved Me — but Now That He Knows I’m Positive, He’s Afraid of Me
(A recent post from the "I Just Tested Positive" board)

I just found out I was HIV positive back in September. I had split with my boyfriend of a year and dated someone else. I thought that by asking him the last time he was tested that he would be honest. I ended up getting really sick and split up with the new guy. My ex came back into my life and took care of me when I was sick for two months. I went in for my regular yearly tests and found out that the “rebound” guy had lied about being tested. I tried to contact him, but he wouldn’t answer my calls or texts. My boyfriend now was tested and is negative (thank god). He initially stood by my side, but recently has freaked out. He has nightmares of me with this faceless man that infected me and is terrified of getting sick. The man that took care of me and said that he loves me now is scared of me. He doesn’t open up to people and says he has to figure it out himself. Any advice for him? For me? Any Web sites that may help? — pincushion

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OTHER HEALTH ISSUES & HIV/AIDS
 Fatigued All the Time: What Can Be Done?
I was diagnosed with HIV in 2008 and quickly deteriorated. I now take Intelence (etravirine), Invirase (saquinavir), Isentress (raltegravir), Kaletra (lopinavir/ritonavir) and Trizivir (AZT/3TC/abacavir), as well as Avelox (moxifloxacin), Zithromax (azithromycin) and Zovirax (acyclovir) for opportunistic infection prevention. My viral load is 450 and my CD4 count is 284. I have a good career and am able to function, but I’m constantly fatigued. I’m alive, but I’m definitely not living, and my doctor refuses to prescribe a mild stimulant. Is there any hope for me?

 At What Point in My Pregnancy Should I Start Taking HIV Meds?
I’m pregnant, but I’m not on HIV meds yet because my CD4 count is 556. I was advised that, with my high CD4 count, my baby should be safe from HIV transmission without my taking HIV meds. Is this true? If not, when do you think I should I start meds?

More Questions About Other Health Issues & HIV/AIDS:

HIV TESTING & TRANSMISSION
 Why Are There So Many Mixed Messages About the HIV Testing Window Period?
There appear to be a lot of mixed messages out there regarding HIV testing. Some guidelines say the window period is three months, others say six months — and I’ve even heard that there have been cases of people testing positive after a year. What is the truth?

 Does the Length of Exposure Matter in HIV Transmission?
I was having protected vaginal sex with a Siberian sex worker. At some point, I felt like something was amiss. I pulled out 10 seconds later to see that the condom had broken. If the sex worker was HIV positive, would it be possible to get HIV from 10 seconds of unprotected vaginal sex?
STRANGE BUT TRUE
 I Masturbate: Please Don’t Tell My Dad!
My dad told me that if I masturbate, I will get a terminal disease because God will punish me. I think he is talking about HIV. Is this true? If I show up with HIV, my dad will know I masturbated! Please help — and don’t tell my dad I wrote to you!

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