Take Action! Tuesday, July 18, is National HIV Call-In Day!

We know we have asked you to do a lot over the last several months. You have faithfully called Congress time and again to tell them to #KillTheBill. We thank you! We know that you may be feeling fatigued. That is EXACTLY what the Republicans want to happen. We CANNOT let up. We CANNOT stop pushing. We must continue to RESIST if we are to #ProtectOurCare. With your help we will #KillTheBill once and for all! Please keep up the pressure this week and keep those calls to your Senators coming!

Join the National HIV Call-In Day Tuesday, July 18!

The new Senate bill is even worse than the last version. Your senators need to hear from everyone. Call 866-246-9371 to connect to your senators. You can tell them:

“My name is _____ and I live in [city, zip]. I’m a person [living with/concerned about] HIV and I’m calling to urge Senator ____ to reject the BCRA. The changes that have been made to the bill do not change the fact that it will slash Medicaid, allow discrimination against people with preexisting conditions and make insurance coverage more expensive and less comprehensive. We are counting on Senator ____ to stand up for his/her constituents and vote no on the BCRA!”

Want to do more?

· Organize a phone bank! Do you work or volunteer for an organization that provides services for or advocates for people who would be affected by the changes to health care? Have some friends and family who are also worried about the impending health care disaster? Use this toolkit to organize your own phone bank to #KillTheBill. Calls are particularly needed to the following senators:

o Targets most likely to vote no: Collins (ME), Heller (NV), Murkowski (AK), Capito (WV)

o Targets expressing reservations; could be persuaded: Flake (AZ); /McCain (AZ); Portman (OH)
Cassidy (LA);

o Targets unlikely to vote no in final vote, but could help stall: Cotton (AR); Boozman (AR); Gardner (CO); Young (IN); Grassley (IA); Ernst (IA); Rounds (SD); Hoeven (ND); Moran (KS); Graham (SC)
Corker (TN)

· Join the Occupy TrumpCare action in D.C. July 19! Email KillTheBillJ19@gmail.com to learn more.

· Visit Positive Women’s Network-USA #KillTheBill Resource page for the latest tools and talking points to support your advocacy.

Learn more!

· This editorial from the New York Times summarizes quite neatly why the revised bill is in many ways even worse than the last version.

· Here is more comprehensive detail on what is and is not in the new bill, as well as where key Senators may land on it.

· Find out where your Senators stand on the bill on this page, which is being updated in real time.

Abdominal Fat Accumulation in HIV: Interview with Dr Grinspoon

Nelson Vergel from PowerUSA.org interviews Dr Steven Grinspoon from Harvard Medical School about what we know about HIV lipodystrophy associated fat accumulation. Dr Grinspoon covers potential causes and treatments. For more information please refer to the closing image at the end of the video.

1. Please give our audience background information on what HIV lipodystrophy is.
2. What causes HIV lipodystrophy? How is HIV lipodystrophy different than other lipodystrophies?
3. What types of fat tissue does the body have? What are their metabolic functions, if any?
4. Why is visceral fat and dorsocervical accumulation not just a cosmetic issue?
5. Talking specifically about visceral fat (VAT), have we learned about what makes someone more or less prone to having increased VAT before and after starting antiretrovirals? Is increased VAT driven by HIV as much as ART? Inflammation?
6. Are some antiretrovirals “better” than others when it comes to avoiding excessive VAT increase? Can switching HIV regimens improve VAT?
7. What kind of hormonal, lipids and glucose issues have you seen in your research with HIV+ patients experiencing increased VAT?
8. What is growth hormone pulsatile release and how does it differ in HIV lipodystrophy patients?
9. Are there any ways to predict who may have more increased VAT when starting HIV ARVs?
10. VAT then and now- Is increased VAT as common now as it was back in the 90’s and early 2000’s? If not, why? is current lipodystrophy being hidden by the aging of the HIV population? Is our perception of a decrease in prevalence being affected by the increase of fat tissue due to aging? Does current day LD look different and how?
11. What treatments are approved to manage adipose tissue accumulation in HIV? How effective is it?
12. How can we predict if someone will be a good responder to the therapy? When someone responds what should they expect? Does something happen metabolically before the response happens?
13. Can exercise and diet work in synergy with the adipose tissue treatment? How about any synergy with Metformin?
14. How does liver fat affect someone’s health? Do we experience more liver fat in HIV lipodystrophy?
15. Can you tell us how VAT can affect carotid intima thickness, coronary calcium, hypertension, neurocognitive, and mortality?
16. Follow up, will a reduction in VAT improve these? What about SAT?
17. Why has leptin not been studied further?
18. Your team recently published a puzzling study on DICER deficiency in HIV lipodystrophy patients. Can you elaborate on your findings and what they may mean clinically?
19. Why does it seem that a lot of the HIV lipodystrophy research interest has decreased in the last few years? What can patient advocates do to advance more research?


Interview with Dr Gerald Pierone About HIV Lipodystrophy Options

Nelson Vergel, director of Program for Wellness Restoration, interviews Dr Pierone about his long experience treating patients with HIV facial lipoatrophy and his upcoming study for patients with HIV related abdominal fat accumulation. His website is www.FacialRejuvenationFL.com You can also ask him questions on TheBody.com. You can also find more info on PoWeR’s site www.FacialWasting.org


Dr. Gerald Pierone Jr. has performed over 20,000 procedures with dermal fillers that include Bellafill® (Artefill®), Sculptra®, Radiesse®, Restylane®, Belotero®, Voluma® and Juvederm®. Dr. Pierone is the leading injector of Bellafill® in the United States and is a nationally recognized trainer and researcher. He has also achieved Black Diamond Elite status with Allergan – Juvederm®, Voluma®, and Botox® – the top 1% of all doctors. Dr. Pierone is also a member of the prestigious Liquid Face Lift Association – reserved and restricted to physicians who have performed thousands of dermal filler procedures while demonstrating excellence with facial fillers. He also serves as a panel expert for facial fillers, facial rejuvenation and facial wasting.
Dr. Pierone trained at The Mount Sinai Medical Center in New York and received his medical degree from University of Florida. He is board certified in internal medicine and infectious disease. In 1990, he relocated to Vero Beach, Florida to establish a medical practice. In 2005, he learned how to inject facial fillers to treat HIV-related lipoatrophy. Since then, he has developed an active private practice focused on facial rejuvenation with facial fillers, PDO threads and energy-related aesthetic treatments.

WORLD AIDS DAY: Time to Help Victims of HIV Drug Studies and Resistance

We have repeatedly heard the following statements about multi-drug resistant HIV (MDR-HIV) patients in a host of meetings on treatment access and HIV research: “These patients no longer exist – they’re either dead or have responded to the latest ARVs”; “Only patients who do not adhere to their HIV regimens have MDR-HIV”; and “Our clinic cannot provide expanded access programs (EAPs) due to cost and staff restraints.” However, after surveying physicians around the country, we have found that although these patients are in a minority, they do exist and are anxiously waiting for access to viable regimens that could save their lives.

No one can deny that many patients can now suppress their HIV with effective regimens that cause fewer side effects. However, a vulnerable and often forgotten minority of people are still struggling with MDR-HIV while they anxiously await for access to life-saving regimens that would finally control their virus replication. Although some of these patients may have developed resistant HIV due to lack of adherence or other issues, many of them have been strictly following their doctor’s orders for years.

They’re often veterans of drug development research who have accumulated HIV resistance as they repeatedly joined antiretroviral (ARV) studies or traditional EAPs of a single new drug out of desperation to control their HIV viral load. As they signed up for studies that helped companies get their drugs approved by the FDA, many of these patients were exposed to suboptimal HIV regimens (namely, functional monotherapy or the addition of a single new active ARV to a failing HIV regimen). It is time to create a new paradigm to break the vicious cycle of single drug access that has failed these patients.

More: http://www.poz.com/pdfs/gmhc_treatmentissues_2012_12.pdf

Ten News Items That Have Made Me Happy During the Past Month

These past several weeks have been great on many fronts. While taking a shower this morning, I counted a few of the great pieces of news that have come our way amidst all the negative news that the media dwells on to increase ratings. 


Diabetic Retinopathy in HIV Subjects Treated With EGRIFTA®

This is a study required by the FDA to determine if Egrifta use in HIV+ people with diabetes can increase the risks of diabetic retinopathy.


Diabetic retinopathy  is a complication of diabetes that affects the eyes. It’s caused by damage to the blood vessels of the light-sensitive tissue at the back of the eye (retina).
At first, diabetic retinopathy may cause no symptoms or only mild vision problems. Eventually, however, diabetic retinopathy can result in blindness.
Diabetic retinopathy can develop in anyone who has type 1 diabetes or type 2 diabetes. The longer someone has diabetes, and the less controlled your blood sugar is, the more likely you are to develop diabetic retinopathy.
To protect their vision, patients with diabetes should take prevention seriously. Patients should carefully controlling their blood sugar level and scheduling yearly eye exams.
Previous studies have show that the use of growth hormone contributes to the development of diabetic retinopathy in humans. (http://care.diabetesjournals.org/content/17/6/531 )
Egrifta is a growth hormone releasing hormone, hence the concern from the FDA.
EGRIFTA® is an FDA-approved treatment for the reduction of excess abdominal fat in HIV-infected patients with lipodystrophy.

More information on Egrifta on Egrifta.com

New treatments for HIV associated lipodystrophy beyond Egrifta

Question from a person living with HIV:
May 2, 2012

I body build and work out, eat right, etc. The lipodystrophy I accumulated during my early use of Crixivan and others doesn’t really go away that much. It’s frustrating, depressing.
I do also appear to have some features of “muscle belly” where there is a space between my lower abs (possibly caused by strain). I’ve read about adbominoplasty.
Apart from egrifta, which my ID doc does not recommend, what other options are there now or on the horizon?
I want to get a CT scan of my gut to see just how pervasive it is. But to my knowledge, it’s not just easy to go in to the organ area and remove the omentum, etc. That’s all very risky.
Over the years I’ve gotten very depressed about it, even to the verge of eating disorders. I have 2 closets full of nice shirts that I can’t/wont wear, as my gut protrudes. I’m otherwise very in shape and muscular.
What can I do? Is there any hope for this problem…

What to do if you think you have recently been exposed to HIV

This would definitely be the HIV medication combo that I would take if I was HIV negative and wanted to treat a potential HIV exposure (condom breakage, needle stick, etc). Prior studies were done using Truvada alone (two drugs combined in one pill), but adding raltegravir to Truvada makes a lot of sense. Raltegravir (brand name Isentress) is the HIV medication that lowers HIV viral load the fastest, which is something you need if you have been exposed in the last few hours. It also happens to be a very well tolerated medication.

Note: If you get exposed to HIV, you need to treat quickly (within 72 hours), and then stay on treatment for 4-8 weeks

But a one month supply of Isentress plus Truvada would cost more than $1000. Some people call local HIV doctors or health clinics to find out who has extra medications, or just pay for the medications themselves since insurance companies do not pay for post exposure prophyplaxis treatment. And that is where the dilemma lies..

Here is a small study using the Isentress+ Truvada combo for post exposure prophylaxis :

Note: If the person that may have exposed you to HIV is on treatment and has undetectable viral load in their blood, the chances of infection are minimized.  So if you can ask that person about their lab numbers, that would provide additional information for your doctor to make a decision.

For HIV doctors around the United States: Directory of HIV Physicians

PoWeR asks for your support and end of year tax deductible donation

Program for Wellness Restoration (PoWeR,  http://powerusa.org/  ) is going through a tough financial time now that most industry educational grants have been eliminated.  We ask you to think about us when conmsidering organizations to make tax deductible donations before the end of the year.
In 2011, PoWeR has been able to accomplish the following with a very small budget :
– Provided 26 lectures on health to HIV positive people around the United States
– Published 78 blog articles  (http://survivinghiv.blogspot.com/ )
– Coordinated an upcoming expanded access program using two investigational drugs for people with HIV who have run out of treatment options. (http://bit.ly/tWkdk4  and http://bit.ly/s98yHL )
– Moderated http://health.groups.yahoo.com/group/PozHealth/ , a 9 year old listeserve with close to 4000 members from all over the world
– Produced a video to raise awareness on the challenges surrounding finding a practical cure for HIV (http://www.youtube.com/watch?v=Sj-dFQ6Yi7k )
– Provided technical advise to 4 other non profits ( Red Hispana, The Houston Buyers Club, The Positive Project, and Live Consortium)
– Answer questions  weekly at thebody.com ( http://bit.ly/twag7J )
– Created a petition to improve Medicare coverage of facial wasting therapies (http://bit.ly/rR2G0N )
– Created a resource list : http://powerusa.org/resources.html
If you or someone you know has been helped by our work and want to see us continue it, please do not hesitate to make a contribution by using this link:http://powerusa.org/donate.html or by sending a check to:

Program for Wellness Restoration
P.O. Box 667223
Houston, TX  77266

Thank you in advance for ensuring that our mission continues in 2012.
In health,
Nelson Vergel
Founding Director