AIDS Law Project issues guidelines for appealing denial of SSI on basis of addiction
FDA grants approval for nevirapine
Endocrine problems found in PWAs
Vitamin B said to increase survival
FDA panel rejects urine test for HIV
Rare food parasite eyed in illnesses
Study: managed care threatens women, kids
AIDS Ride draws 1900 participants
FIGHT enrolls for new nutrition trial
AIDS Law Project issues guidelines for appealing denial of SSI on basis of addiction
by Nan Feyler, AIDS Law Project
Debby Freedman & Rue Landau, Community Legal Services
Because of a new law passed by Congress, if you receive Supplemental Security Income or Social Security Disability Insurance benefits (SSI or SSDI) based on drug addiction or alcoholism, you may lose your benefits on December 31, 1996.
But don't give up! You can keep getting benefits if you can show that you are disabled for another reason. These reasons can include some HIV-related symptoms, as well as depression, anxiety, diabetes, arthritis, or other medical or psychological conditions. Read on to find out how to prove you have another disability and keep getting benefits. Continuing to get your monthly check and a medical card may depend on it.
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If you get SSI -- or combined SSI/SSDI -- because of drug or alcohol addiction, you will get a letter saying that you will be cut off from benefits. But don't give up -- you have the right to file an appeal, and you can continue to get benefits during the appeal process. You have 15 days from the date on the letter to appeal. If you miss this deadline, your benefits will end on December 31, 1996.
If you get SSDI only and you appeal, you can continue to get benefits during the appeal process, but only until December 31, 1996. However, if you appeal by July 28, 1996, Social Security will review your appeal and make a determination by December 31, 1996.
If you miss the deadline to appeal, you may still appeal if you can show a good reason for missing the deadline. Examples include illness, not receiving the notice, or an unavoidable circumstance that prevented filing the appeal on time. But it's much better if you don't miss the deadline and you appeal on time.
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Here's how to appeal:
1. The best way to appeal is to go to the local Social Security Office and appeal in person. Bring a list of doctors you have seen and any hospitalizations you may have had. Be precise and accurate with any names and addresses of medical care providers.
Insist on being seen that day. If they really can't see you that day, make them give you a piece of paper saying that you were there that day to appeal. Then go back the next day. Make sure you get written proof that you filed your appeal.
2. If you cannot appeal in person, you can appeal over the phone by calling 1-800-772-1213. Write down the time and date that you filed your appeal, and the name of the person that you spoke to.
3. Whether appealing in person or on the phone, tell the worker that you want to appeal and that you believe you are disabled by something other than drugs or alcohol. Tell the worker all the things that are wrong with you and might keep you from working.
4. You must be in treatment for whatever disables you. If you have stopped going to doctors or psychiatrists, go back and make sure they examine and treat you. You will have to get records and letters from your doctors or clinics showing what is wrong with you and how it keeps you from working.
5. If you get SSI (or combined SSI/SSDI), make sure you request a face to face hearing and request a "continuation of payment" so that your checks and medical card continue while you are waiting for a decision.
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Good luck! This can be a hard process, but don't give up. We are here to help. If you have any questions you can call the AIDS Law Project of Pennsylvania at (215) 587-9377.
FDA grants approval for nevirapine
The Food and Drug Administration has granted accelerated approval for nevirapine, which is a non-nucleoside reverse transcriptase inhibitor and the first of a new class of drugs for the treatment of HIV infection. Boehringer of Ridgefield, Connecticut, manufactures nevirapine under the trade name Viramune.
Nevirapine was approved for use in combination with nucleoside analogues for the treatment of adults with HIV infection. FDA officials warn that clinical studies have demonstrated that HIV can become rapidly resistant to nevirapine and FDA approval is for its use only in combination with at least one other antiviral agent.
Nevirapine's mechanism of action is similar to that of AZT and ddI. The drug's most common side effect is skin rashes. Drug labeling advises healthcare providers to discontinue nevirapine therapy if a severe rash, blistering, oral lesions, conjunctivitis, swelling, muscle or joint aches or general malaise develops.
The drug is expected to be available for use by August.
Since March of this year, the drug has been available to patients through an expanded access program, which allows access to promising drugs for serious diseases prior to marketing approval. There will be a transition period for those patients enrolled in the expanded access program. The company shortly will announce plans for a reimbursement assistance program.
Endocrine problems found in PWAs
Georgetown University researchers have reported a study showing curable endocrine problems were far more frequent in HIV-infected patients than in the general public, explaining some of the undiagnosed ailments common among people with HIV/AIDS.
The study of 50 HIV-positive patients, presented at the International Congress of Endocrinology in San Francisco, found they were far more likely to develop adrenal insufficiency, hypogonadism and thyroid dysfunction -- conditions that often go undiagnosed in these HIV patients. Hypogonadism, for example, was at least 37 times more frequent in the study group than in the general population.
Endocrine disorders often are not detected in HIV-patients based on clinical histories alone, leaving the individual with no treatment, said Dr. Terry Taylor, the study's lead researcher.
Many of the symptoms of adrenal insufficiency, for example, are common in HIV patients, including nausea, fatigue, dizziness and abdominal complaints.
"If most people had these symptoms, they would go to the doctor, but these are very normal symptoms for people with HIV," Taylor said. "The symptoms don't pop out."
Although the clues are not always obvious, by examining the symptoms in the context of other signs of an endocrine problem, including a low blood-glucose level, physicians ultimately should be able to identify more of the resulting metabolic imbalances, she said.
In the Georgetown University study, conducted with 50 consecutive consenting HIV-positive patients in the university's health center, cases of endocrine Taylor found a 6-percent prevalence of adrenal insufficiency, a 37-percent prevalence of hypogonadism -- compared to less than one percent of each in the general public -- and a 12-percent prevalence of thyroid dysfunction.
Endocrine problems are curable, she said, and can lead to a better quality of life, and in the case of adrenal insufficiency, possibly prolong life.
"Physicians just are not aggressively screening for this very treatable disorder," she said.
Androgen deficiency and growth hormone resistance may also contribute to the critical loss of lean body mass, which is often associated with AIDS, researchers said.
In a separate study, Steven Grinspoon, a Massachusetts General Hospital endocrinologist, found that in men with AIDS Wasting Syndrome, the decline in testosterone is associated with lean body mass and loss of muscle.
Because growth hormone levels are increased as weight decreased, the findings indicate a resistance to growth hormone, Grinspoon said.
By understanding this syndrome, he said, therapies can be designed to reverse the wasting process.
"This research points to a role for endocrinologists in the care of patients who are living with AIDS," said Endocrine Society President Lynn Loriaux. "Proper care of the body's systems -- including the all-inclusive hormone system -- can enhance the quality of life for AIDS patients."
Vitamin B said to increase survival
High intakes of vitamin B supplements may be associated with improved survival of patients infected with HIV, researchers at Johns Hopkins University have found.
Led by Alice M. Tang, the scientists compared daily micronutrient intake with subsequent mortality over an eight-year period. Tang found that the patients with the highest intake of B-group vitamin survived an average of 1.3 years longer than those with lower intake levels. Vitamin B6 intake of more than twice the recommended allowance was especially associated with longer survival. Vitamin B1 and B2 intake of more than five times the recommended daily allowance was also associated with improved survival, while increased zinc intake was associated with poorer survival.
FDA panel rejects urine test for HIV
A urine-based HIV-1 test was not recommended for approval by an advisory committee to the Food and Drug Administration. The test combines a screening assay, developed by Calypte Biomedical of Berkeley, Calif., with a confirmatory Western Blot. Reviewers were concerned that a urine test would not be as sensitive or specific for HIV-1 antibodies as a serum screening test.
Rare food parasite eyed in illnesses
After confirming 28 cases in Massachusetts of persistent diarrheal illness linked to a food-borne parasite, state health officials are considering warning doctors to watch for more cases involving the unusual microbe. The infection has been reported in several hundred people in North America. The Massachusetts health department is not advising people to avoid any fruits or vegetables, but is recommending that people with compromised immunity--like those infected with HIV or who are undergoing cancer treatment--consider eating only cooked, peeled, or locally grown produce. The illness--caused by a one-celled organism called Cyclospora cayetanenis-- can lead to severe dehydration if left untreated.
Study: managed care threatens women, kids
A New York study showed that Medicaid managed care plans are mostly deficient in providing HIV-infected women with access to experienced primary care professionals in HIV care
New York City has asked theFederal government to be allowed to require Medicaid patients and HIV-infected women and children to join managed care plans. The study author suggests a class-action malpractice suit against these managed care organizations for not providing appropriate HIV/AIDS training to their contracted physicians.
Under a reorganization of Pennsylvania's Medicaid program to begin later this year, people with HIV/AIDS will be similarly required to join Medicaid managed care plans by next July. Some women and children with HIV, who are not formally "disabled" under state and federal guidelines, will probably be moved into the plans by January, 1997.
AIDS Ride draws 1900 participants
The Philadelphia-to-Washington D.C., bicycle ride that ended Sunday was one of five AIDS rides across the country that together are expected to raise $25 million for AIDS organizations.
The 1,901 riders that ended their trip from Philadelphia near the Washington Monument raised $4.5 million, according to the Washington Post. About half of the proceeds go to cover the costs of putting on the event -- including about $360,000 for the Ride promoter, Daniel Palotta and Associates -- with the remainder being distributed between Washington's Whitman-Walker Clinic and Food & Friends, and four Philadelphia AIDS service organizations: ActionAIDS, the AIDS Information Network, Philadelphia Community Health Alternatives, and the Greater Philadelphia Urban Affairs Coalition. The Urban Affairs Coalition intends to distribute its portion of the proceeds to minority-run HIV/AIDS service groups in the Philadelphia area.
Many of the participants, who were required to raise a minimum of $1,400 each, said they rode in support or in memory of friends with AIDS.
FIGHT enrolls for new nutrition trial
Philadelphia FIGHT is enrolling a clinical trial which will test whether food supplements, like Sustacal and Ensure, will prevent people from experiencing severe weight loss, known as wasting syndrome. The trial is for people who have less than 100 t-cells, and who have not recently lost weight. The importance of this trial is that it will help determine whether nutritional supplements actually keep people from experiencing wasting, and whether this, in turn, will lead to better survival for people with AIDS.
Everyone participating in the trial will receive free food supplements. For more information, please call Philadelphia FIGHT at 215/985-4448, or write them at 1233 Locust Street, 5th Floor; Philadelphia, PA 19107.