Roaming the USA and the globe for emerging and cutting edge HIV and health information usually not found in a doctor's office or in publications. A blog of Program for Wellness Restoration: www.powerusa.org
What new HIV medications do we have to look forward to over the next few years? How will these newer drugs improve upon the older ones? To shed some light on these questions....
TheBodyPRO.com's Nelson Vergel sat down with leading HIV cure research activist Richard Jefferys for an update on current important aspects, and controversies, in HIV cure research....
Sign-On to Support an Increase in Medicare Reimbursement for Facial Fillers
A prominent AIDS activist is asking people with HIV and the organizations that serve them to sign on to a letter asking the agency that sets reimbursement rates for Medicare to boost the rate it offers doctors to administer the facial fillers Sculptra (poly-L-lactic acid) and Radiesse (calcium hydroxylapatite).
Activists thought they’d won a major battle when the Center for Medicare and Medicaid Services (CMS) announced in March 2010 that the government health insurance program would begin covering the costs of Sculptra and Radiesse for people who have psychological trauma due to loss of fat in their faces, a condition known as lipoatrophy or facial wasting.
Sculptra and Radiesse are both temporary facial fillers that require touch-ups at least once per year for most people. The retail cost of a vial of Sculptra or Radiesse usually tops $500. As most people need a minimum of four to six treatments, and as doctors charge about $500 to $900 to inject the filler, a full course of treatment can easily exceed $4,000.
It’s the latter point, reimbursement for the physician’s fee, that has Nelson Vergel, a longtime AIDS activist from Houston, and other activists up in arms. Though doctors typically got $500 or more per treatment from their cash-paying patients to inject the facial fillers, Medicare is typically reimbursing only about $80. Obviously, the math doesn’t add up.
“The cost of acquiring and administering the product is higher than the payment amount set by Medicare,” he explains in the letter he’s asking people to sign on to. “As a result, physicians are not accepting Medicare payments for this service, and patient access to these effective therapies remains quite limited at the current reimbursement rates.”
To sign on to a letter demanding that Medicare increase its reimbursement rate for Sculptra and Radiesse treatment, click herebefore April 18.
Wellcare put together a great summary of all codes used for reimbursement. Medicare decided in January 2010 to cover HIV facial lipoatrophy products as long as the patient has depression induced by this condition.
For Immediate release Contact: CMS Office of Media Relations
March 23, 2010 (202) 690-6145
MEDICARE EXPANDS COVERAGE FOR TREATING FACIAL LIPODYSTROPHY SYNDROME IN PEOPLE LIVING WITH HIV
The Centers for Medicare & Medicaid Services (CMS) today announced its decision to cover facial injections for Medicare beneficiaries who experience symptoms of depression due to the stigmatizing appearance of severely hollowed cheeks resulting from the drug treatment for Human Immunodeficiency Virus (HIV). Today’s decision is effective immediately.
Facial lipodystrophy (LDS) is a localized loss of fat from the face, causing an excessively thin appearance in the cheeks. In some cases, facial LDS may be a side effect of certain kinds of medications (antiretroviral therapies) that individuals receive as part of an HIV infection treatment regimen.
The facial LDS can leave people living with HIV looking gaunt and seriously ill, which may stigmatize them as part of their HIV-infection status. Individuals who take these medications and experience facial LDS side effects may suffer psychological effects related to a negative self-image. These effects may lead people living with HIV to discontinue their antiretroviral therapies. The new decision allows for treatment of individuals who experience symptoms of depression due to the appearance changes from facial LDS.
The injections included in today’s coverage decision are “fillers” that have been approved by the U.S. Food & Drug Administration (FDA) to be injected under the skin in the face to help fill out its appearance specifically for treatment of facial LDS. Data show that these injections can improve patient self-image, relieve symptoms of depression, and may lead to improved compliance with anti-HIV treatment.
“Today’s decision marks an important milestone in Medicare’s coverage for HIV-infection therapies,” said Barry M. Straube, M.D., CMS Chief Medical Officer and Director of the Agency’s Office of Clinical Standards & Quality. “Helping people living with HIV improve their self-image and comply with anti-HIV treatment can lead to better quality of life and, ultimately, improve the quality of care that beneficiaries receive.”
Positive Force will present “Survivor Health Wisdom: Strive to Thrive While Growing Older with HIV” on Wednesday, Feb. 17, 6:30-9:30 p.m. at the San Francisco LGBT Community Center, 1800 Market and Octavia Streets. Join Nelson Vergel, author of Built to Survive, for the latest information on lipoatrophy, combating premature aging, and much more. A light dinner will be provided. To take advantage of the fact that Vergel will be in the Bay Area for a conference, Positive Force scheduled this event on the third Wednesday of the month. Twice annually, Positive Force produces a community health forum on a hot button issue. “Survivor Health Wisdom...” is a Positive Force community health forum.In this instance, they decided to do a forum on HIV and aging. The face of HIV changes with each passing day. For example, thanks to treatment advances, many people living with HIV today are living longer lives. Along with longer lives come the usual health concerns: increased risks for heart disease, non-HIV related cancers, bone loss, decreased mental function, etc.
However, a plethora of recent research has clearly demonstrated that people living with HIV are suffering from accelerated aging; sometimes their minds and bodies manifest problems decades earlier than their HIV-negative counterparts. Consequentially, researchers, medical providers, treatment advocates, and HIV-positive people alike are trying to figure out how to conquer this new phase of living with HIV.
Many community forums on HIV and aging involve doctors and other socio-medical professionals speaking clinically, and providing the same information, from the same point of view, time and time again. Positive Force decided to move in a different direction. They invited Vergel, a man who has lived with HIV for more than two decades and who is an internationally renowned treatment advocate, to discuss HIV and aging concerns from a peer perspective. Vergel has traveled the world talking about living and thriving with HIV; has written books on the topic; and has been featured in numerous publications for his expertise and perspective.
Participants who attend the forum will benefit from Vergel’s unique perspective, presentation style, and lots of information. He will present the latest treatment information, both clinical and practical, for a range of subjects, including but not limited to lipodystrophy/ lipoatrophy, accelerated aging of both mind and body, and sexual health. Forum attendees will walk away with a better handle on how to deal with problems they may already be facing and how to prevent new problems associated with HIV and aging.
Vergel is a 27-year HIV survivor, Venezuelan, retired chemical engineer, lecturer and author of Built to Survive, founder of the Body Positive Wellness Clinic in Houston, and treatment activist involved in research advocacy. Bay Times interviewed him recently. “I am the founder of pozhealth at yahoogroups.com, the largest online health discussion group, and serve as an expert at thebody.com, the HIV web site with the largest reach in HIV related health issues,” he said. “I have provided over 600 lectures since 1994 in English and Spanish. I am a member of the DHHS HIV Treatment Guidelines Panel. I have presented in many conferences about issues related to living with HIV.”
What is different about what he does is his being able to lecture in layman terms by blending the latest research data with a patient perspective.
He spoke of the hot topics in HIV in the next five years. “The search for a cure using stem cell and immune based therapy research will become more important as well as how to deal with long term effects of HIV medications on aging, frailty, cognitive function, bone density, frailty, body changes, and others,” said Vergel. “Combating stigma and dealing with challenges in funding will be essential to controlling the spread of this epidemic.”
Vergel provides a unique angle to patients. He speaks in their language about the latest research findings on facial lipoatrophy options, cardiovascular health, sexual dysfunction, hormonal balance, exercise and nutrition, latest HIV medications for those with limited treatment options, side effect management, and many other issues that are important to patients.
For everyone who has complained about the lack of insurance reimbursement for facial lipoatrophy treatment, or about the lack of good permanent fillers approved for facial lipoatrophy, now is your chance to do something. Please follow the link below to submit a comment in response to Mediare's request for comments on Reconstructive Treatment for Facial Lipodystrophy Syndrome. Even if you have private insurance, private insurers are likely to follow the lead of Medicare, the country's largest health program. Manufacturers of facial fillers are more likely to seek FDA approval if there is a potential for insurance reimbursement for their products. This is probably the best opportunity we've ever had to do something about insurance reimbursement for facial wasting procedures. With a new, more enlightened administration in the White House, I think there's a good chance that Medicare will change its policies in response to reasonable arguments that treatment for facial wasting is reconstructive (like reconstruction of a breast after breast cancer or like surgery to eliminate disfiguring burn scars).
Powerful personal anecdotes about how facial wasting has affected you are likely to be persuasive, particularly if you can talk about how it has caused social isolation or impaired your ability to work. Pictures will speak louder than words; if you have pictures of your face before and after treatment for facial wasting, posting them with your comments could help the cause enormousely. There is an email link on the form for attachments.
If you choose to write personal anecdotes or submit pictures, the government will redact (delete) anything you write about your personal experience with facial lipoatrophy from the comments posted on the website, and will not post personal photos (before you can comment, you are required to read a statement from the government stating that statements about personal health conditions will not be posted on the website). But presumably, these comments (and photos) will still reach the intended decision makers in the government in their unredacted form. I personally chose to begin with a paragraph that stated my opinion about the proposed change to policy and then discussed my experience from working with people with HIV. Presumably, these comments will be posted on the website. Then I went on to describe my personal experience with facial lipoatrophy, providing a couple of anecdotes that I thought demonstrated the effect it has had on me. I presume these comments will not be posted, although I don't really mind if they are. Please click on the orange "comment" button to explain to Medicare why you think facial lipoatrophy is a medication-induced side effect that needs to be treated and covered. If you can add your own personal experience as a patient or as a clinician, even better!
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