HIV and aging
Gardasil in HIV
Physician fellowships
Measuring hep B viral load
Potential drug problem reports
Mexico conference toxicities
Castleman’s disease
SurvivorshipAtoZ.org
HIV and aging
In September, at the U.S. Conference on AIDS held in Fort Lauderdale, Florida, the AIDS Institute launched its first National HIV/AIDS and Aging Awareness Day. The initiative seeks to “highlight the complex issues related to HIV prevention, care, and treatment for aging populations in the United States.” The Institute noted that according to 2005 figures from the U.S. Centers for Disease Control and Prevention, people over 50 made up 24% of all people with HIV in this country, and 15% of new HIV/AIDS diagnoses. In regards to AIDS alone, individuals over 50 made up
- 19% of all AIDS diagnoses
- 29% of all people living with AIDS
- 35% of all deaths of people with AIDS
The rate of HIV/AIDS was 12 times higher among blacks and five times higher in Latinos compared to whites in people over 50. Three important groups of aging individuals for the awareness campaign are people already living with the virus, people at risk for the virus—especially the Baby Boomers—and people raising their grandchildren after parents with HIV/AIDS have died. The Institute has offices in Washington, D.C. and Tampa, Florida. Visit www.aidsinstitute.org.
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Gardasil in HIV
Gardasil, the vaccine against the very common sexually transmitted disease HPV (human papilloma virus) is now being tested in adult women, including a study in HIV-positive women. The vaccine is currently FDA-approved for girls and young women ages 13 to 24, but it has shown to be effective in women up to age 45. That research, however, did not include HIV-positive women, a group at great risk of HPV complications, including cervical cancer (cancer of the lower end of the uterus or womb). The study with positive women is from the AIDS Clinical Trials Group, and is study A5240. In Chicago, it is being conducted at Rush University Medical Center. Please e-mail Joan_A_Swiatek@Rush.edu for eligibility and enrollment information.
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Physician fellowships
From the HIV Medicine Association (HIVMA): “[The association] is now accepting applications for its second annual Minority Clinical Fellowship. The one-year fellowship enables underrepresented minority post-residency physicians to gain HIV clinical experience. Two Fellowships will be awarded to African-American and Latino applicants who have demonstrated interest in HIV medicine.” The deadline for applications is February 15, 2009. For more information, visit www.hivma.org. HIVMA is part of the Infectious Diseases Society of America (IDSA).
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Measuring hep B viral load
The U.S. Food and Drug Administration (FDA) in September approved a new test for measuring hepatitis B viral load. The Roche COBAS TaqMan HBV Test is the first real-time PCR test with automated sample amplification and detection of the hep B virus.
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Potential drug problem reports
The FDA in September kicked off a new report for consumers based on its Adverse Events Reporting System (AERS). The new quarterly report, titled “Potential Signals of Serious Risks/New Safety Information,” is a result of recent federal legislation directing the FDA to make such concerns more public. The AERS database contains millions of reports of adverse events submitted to the FDA by drug makers, health care providers, and patients. According to a press release from the FDA, “The appearance of a drug on this list does not mean that FDA has concluded that the drug has the listed risk, or that FDA has identified a causal relationship between the drug and the listed risk. It is on the list only because FDA has identified a potential safety issue.” The FDA also quoted the director of its Center for Drug Evaluation and Research (CDER), Janet Woodcock, M.D., as saying, “My message to patients is this: Don’t stop taking your medicine. If your doctor has prescribed a drug that appears on this list, you should continue taking it unless your doctor advises you differently.” Because the potential risk is so preliminary, the information provided is solely the name of the product and the possible side effect. For example, one HIV drug made the first list in September. The only information given was “Intelence (etravirine), hemathrosis.” (See page 39 for more information on this issue.)
Patients can report serious adverse events or quality problems to www.fda.gov/medwatch. If you do not have Internet access, you can call a number for your state to report serious reactions. Each state has a different number to call. In Illinois, that number is (312) 353-7840. See the entire list of state numbers at http://www.fda.gov/opacom/backgrounders/complain.html. A toll-free service to call U.S. government agencies from TTY devices is available from Federal Relay Services, 1-800-877-8339. The FDA also makes a specific HIV drug update available, and people can sign up for this e-mail list. Go to http://www.fda.gov/oashi/aids/listserve/archive.html and select “join this list.”
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Mexico conference toxicities
Viread (tenofovir DF or TDF), also found in the medications Truvada and Atripla, is a popular HIV drug known for being easy to take. Some kidney toxicity, however, is associated with the medication, and clinics continue to look at that issue with this important drug.
Researchers at Duke University Medical Center looked to see if they could find something to predict who gets kidney toxicity with tenofovir. In their abstract, they stated that, “Tenofovir (TDF) is an efficacious [effective] and widely used antiretroviral agent. Although it is usually well-tolerated, TDF-associated renal toxicity is not uncommon. Clinical predictors of such toxicity are not fully characterized.”
From a cohort study of more than 1,500 individuals with HIV, they found 744 who had taken tenofovir for more than three months. This group of 744 had in their records a baseline creatine (Cr) level from at least a year before they started the tenofovir.
Of the 744, 56 were identified as having tenofovir-associated nephrotoxicity (kidney toxicity). Here, it was defined as a doubling of Cr with or without a Cr level above 1.4 mg/dL in men or 1.2 in women.
So what happened? Every last one of the 35 individuals who had both high blood pressure and other kidney-toxic medications developed significant Cr elevations. More information on these patients is being collected for future reports.
On the other hand, individuals were less likely to develop nephrotoxicity if they started tenofovir as part of their first HIV drug combination, and when a NNRTI (non-nucleoside reverse transcriptase inhibitor) was part of that regimen. This is great news for Atripla, which has the NNRTI Sustiva in it along with tenofovir and Emtriva.
The researchers concluded that, “Clinical risk factors for significant TDF-associated nephrotoxicity are readily identifiable. TDF use should be avoided in patients with hypertension requiring other nephrotoxic drugs, especially if given with a PI. Use as part of initial NNRTI-based therapy is low risk for nephrotoxicity.”
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Castleman’s disease
British researchers reported that there are fewer cases of Kaposi’s sarcoma, a rare cancer that has been seen in people with AIDS, but the incidence of one form of Castleman’s disease is up in people with the virus. The researchers wrote in their abstract, “Multicentric Castleman’s disease (MCD) and Kaposi’s sarcoma (KS) are causally related to infection with human herpesvirus-8 (HHV-8).” Castleman’s disease is a non-cancerous enlargement of lymph nodes, found throughout the body. Symptoms can range from mild to severe. One HIV doctor who saw patients here in the United States said the disease could be terrible. Other similar conditions should be ruled out, for example, lymphoma, lupus, and rheumatoid arthritis. The conference abstract said the increasing incidence rate of the disease “was not related to the degree of immunosuppression, the duration of HIV infections, gender, prior AIDS or HAART [highly active anti-retroviral therapy] use. This is in contrast to the incidence of KS, which was commoner in men, fell dramatically with HAART, and decreased with improved immune function. … The incidence of HIV-MCD is increasing, and this rise is not related to HAART use.”
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SurvivorshipAtoZ.org
David S. Landay, an activist whose life partner died of HIV complications, has launched a website for people with life-threatening illnesses that includes such uncommon information such as what not to say to insurance agents and how to get them from a “no” to a “yes.”
Landay became an activist in the early days of AIDS. He was a founder of Broadway Cares/Equity Fights AIDS, a board member of several AIDS organizations (including the National Association of People With AIDS and National AIDS Fund), and Board Chair in New York City of Community Research Initiative (the predecessor to ACRIA), a grassroots organization which conducted medical research about HIV/AIDS.
After the loss of his life partner, Landay had a strong desire to help keep people from constantly reinventing the wheel with all the blind alleys and stress involved. As a result, he wrote Be Prepared: The Complete Financial, Legal and Practical Guide For Living With HIV/AIDS, Cancer and other Life-Challenging Conditions, published in 1998 by St. Martin’s Press. (Both Mr. Landay’s parents died of cancer). His education at Harvard and Wharton in law and insurance, with more than 20 years experience working with people with life-changing conditions, forms the basis of SurvivorshipAtoZ.org, with all its practical information for the new normal inherent in life after a diagnosis.
The comprehensive website was launched on June 11 with a segment on ABC’s Good Morning America with cancer survivor and co-host Robin Roberts. (The interview can be viewed on the site’s home page under “In The News”). The non-profit site, with initial funding from Johns Hopkins and the City of New York, provides people with the financial, legal, and practical information that answers the questions that come charging after a diagnosis, as well as those which come up 5, 10 or 20 years later, in unprecedented breadth and depth—including form letters and how to complete government forms. The site also offers a free computer-generated report (including videos) personalized to the user’s health, economic, and social situation. The site also explains why, in spite of standard advice, High Deductible Health Plans are good for people with cancer and other life changing conditions.
According to SurvivorshipAtoZ.org, published reports note that more than 30,000 sites provide medical information. SurvivorshipAtoZ, however, aims to avoid all the time and stress of making mistakes and using trial-and-error by integrating information from a practical, legal, and financial standpoint, including personalized information from visitors to the site who need help. The website would like people to know that:
- Over 50% of bankruptcies are due to medical bills—including people with health insurance—and that there are steps people can take to minimize the financial pain.
- Survivors can still get health insurance and life insurance in spite of a health history.
- Only one third of the people who apply for Social Security Disability Insurance get it, but chances can be increased by legally working the system.
When it comes to work:
- People no longer have to be afraid of not being hired or unable to change jobs because of a pre-existing medical condition.
- There are techniques for negotiating accommodations needed because of a health condition (such as time off to go for treatment).
- There are easy steps to take while people are working to make life on disability better if a condition becomes disabling.
- Up to 70% of doctors ignore end-of-life requests, but proper planning can help avoid the situation.
- Pain and depression do not have to be part of an illness.
In a community-focused section, user participation is encouraged to provide practical tips, local information, and resources. Message boards are set up by category (insurance, employment, etc.) with specific boards for business owners and for people who are self-employed. Users will be asked to donate to help keep the site advertising free to avoid any potential conflict-of-interest.
(Editor’s note: The above was taken from a press release from SurvivorshipAtoZ.org.)
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Special 20th Anniversary Issue in
January/February
Positively Aware celebrates its 20th anniversary, going back to its origin as TPA News, with a special issue in January/February 2009. The annual drug guide will be published in March/April instead. If you have any reminiscences or updates about your experiences at TPAN or with Positively Aware that you’d like to share, especially from the early days, please submit them to publications@tpan.com, to our mailing address, or in our online forum by November 24. |
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