HRSA cites numerous problems in city Ryan White application
Addiction, alcoholism excluded as bases for SSI or SSDI
Group issues AIDS virus test guidelines
Hemophiliacs, drug companies move closer to settlement
HRSA cites numerous problems in city Ryan White application
In a report just received by the city and the HIV Commission, the Health Resources and Services Administration (HRSA) addressed problems with Philadelphia's supplemental application that led to over $1.8 million in cuts in local Ryan White Title I Supplemental money which has already been allocated to provide services to people with AIDS in the Philadelphia region.
Ryan White Title I Supplemental funds are part of several programs funded under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, passed by Congress to provide services to people with AIDS in the communities hardest hit by the epidemic. This particular pot of funds is up for grabs every year in a competitive process where cities across the country submit applications to the federal government describing how they would use additional funds to enhance AIDS services.
This year's Philadelphia application, whose primary author is embattled AACO planning manager Jennifer Kolker, was severely criticized by many local AIDS advocates and people living with HIV disease as being incomplete and inaccurate, and misrepresenting key facets of the AIDS services system in place in the Philadelphia region. AIDS service providers and planners also criticized the lack of consultation with others outside the health department in developing the application, which is formally supposed to be the product of an ongoing planning process led by the members of the Philadelphia HIV Commission, which is comprised of community representatives and consumers of HIV/AIDS services.
HRSA's evaluation of the application seems to confirm these criticisms. Excerpts from HRSA's evaluation of the area's application include:
-- The narrative did not clearly describe who participated in priority setting and precisely what the structure was for planning, so the level of involvement by persons with HIV is unclear.
-- Resources to support the effective participation of affected populations and people living with HIV disease were not clearly described.
-- The application did not clearly describe the reporting structure in place for staff [of the Commission] or describe the relationship between the AIDS director and the commission manager.
-- The application did not clearly describe non-personnel support available to the planning council.
-- In regard to resources to support the planning council functioning, the applicant directly responded to only two of five criteria, making it difficult to judge the adequacy of resources.
-- It is unclear how much authority the planning council has over its own operations; for example, the Health Commissioner retains the authority to appoint co-chairs to all committees.
-- Some inconsistencies in the data ...left reviewers with a picture of quantified progress that was incomplete.
-- The applicant identified two non-service expenditures -- outreach/risk reduction and capacity building -- without explaining their scope or rationale.
-- The reviewers were unsure whether the Minority AIDS Project is a single community-based organization or whether it is an umbrella agency for a coalition of organizations. This agency received half a million dollars in FY 1995; yet no (quantitative) narrative was provided regarding its success.
-- From the information provided in the application, it was difficult to determine the rankings of priorities set. All priorities appear to be ranked equally, although the allocations differ.
-- Although the applicant indicated that the health commissioner's Resources Allocation Advisory Committee reviews proposed allocations and is involved in mid-year reallocation activities, the relationship between the committee and the planning council was not described in the application.
-- From the information provided in the application, it is unclear what role, if any, the planning council plays in reallocation decisions.
-- The applicant did not provide adequate narrative describing the disbursement system in place that "allows for rapid reallocation."
According to several AIDS advocates and people living with AIDS contacted by fastfax, the HRSA report is the "smoking gun" pointing to a poorly prepared and reviewed application that led to the loss of almost $2 million in federal AIDS funds.
Others in the region, however, pointed to other problems in addition to the poor application that seem to have led to Philadelphia's loss of funding. Examples included the persisting confusion and concern in the region over the relationship between the health department and the HIV Commission, which are supposed to have a "wall" separating them to assure community-driven AIDS planning. As pointed out in the HRSA evaluation, there is no explanation of the relationship between the AIDS director (AACO director Jesse Milan) and the Commission Manager (Sonya Hunt Gray), and many on the Commission itself have raised concern that it is not clear whether their own manager works for them or the city.
Others raised concern that there is no movement on "program oversight" -- or evaluation of AIDS services -- and HRSA's evaluation of Philadelphia's supplemental application pointed out that there is no explanation of the relationship the Commission will have with a program oversight body. Philadelphia has had for several years as one of its top priorities the development of consumer-driven program evaluation. Last year The Philadelphia AIDS Consortium (TPAC) -- which was then the Title I Planning Council before the Commission -- developed a comprehensive evaluation system run by a program oversight committee. The plan was turned over to AACO several months ago when the Commission assumed the role of Title I Planning Council, but AACO has not yet taken any action to bring the final version of the plan to the Commission for approval or modification or to develop a plan of implementation.
Last week, additional funds were awarded to Philadelphia under the Ryan White "formula" funding category which have alleviated the need to go forward with most of the original supplemental funding cuts.
The HIV Commission has not met since the release of the HRSA review of the supplemental application to discuss next steps and whether some of the cuts identified by the Commission in non-direct services would be implemented even with the increase in other Ryan White money. The next scheduled Commission meeting is in June.
Addiction, alcoholism excluded as bases for SSI or SSDI
by Nan Feyler, Esq.
Executive Director
AIDS Law Project of PA
On March 28, 1996 Congress passed a law, P.L. 104-121, known as the "Contract with America Advancement Act of 1996." This law, which was signed by President Clinton on March 29, includes new rules eliminating drug addiction and alcoholism (DAA) as a basis of disability for both Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). People with HIV/AIDS and their advocates need to understand the changes in the law and develop strategies to try to ensure continued cash benefits and M.A. for those whose Social Security benefits were based on DAA.
In conjunction with Community Legal Services, the AIDS Law Project of Pennsylvania is setting up trainings on this new law. For updated information or advice and to get a schedule of trainings call the AIDS Law Project of Pennsylvania at (215) 587-9377.
The new law alters the Social Security Administration's definition of disability to exclude drug addiction or alcoholism. Drug and alcohol users who can demonstrate that they are disabled based on conditions other than their drug or alcohol addiction are still eligible for SSI or SSDI. For example, a person with DAA who also has AIDS or is schizophrenic may still be eligible for benefits. People with DAA problems, should be encouraged to try to get approved for SSI or SSDI based on other medical conditions. There is no requirement that other disabling conditions be completely independent of any DAA use.
To date, the Social Security Administration (SSA) has not issued any relevant regulations. In fact, the agency seems overwhelmed by the speed with which the law says it must be implemented. This article reflects the limited information in the bill itself, as well as conversations with the SSA Regional Commissioner Larry Massanari and Social Security lawyers from Community Legal Services and other AIDS services legal clinics around the country. Implementation of the law
Since the enactment of the law March 28, 1996, no new applicants have been approved for SSI or SSDI if alcoholism or drug addiction is a "contributing factor which is material" to the Social Security Administration's determination that the individual is disabled. Pending applications (where there has not been a medical determination of disability) will be denied if DAA is material to the applicant's disability.
An HIV infected person who is asymptomatic but disabled by current drug or alcohol abuse is no longer eligible for benefits. Only if a person has another, independent basis of disability will they be eligible for SSI and SSDI. Many HIV infected people who are disabled by DAA, may be in a position to say that their HIV symptoms now justify an award. A person who is disabled by AIDS, regardless of the fact that he or she got HIV through IV drug use, should receive SSI or SSDI, even if he or she is still using drugs.
SSA must notify people who are currently receiving SSI or SSDI (and their representative payees) of this new law by June 27, 1996. We understand letters will be mailed out in batches on June 7, 14 and 21st. According to SSA Regional Commissioner Massanari, there are approximately 1600 people in Philadelphia who receive SSI or SSDI based on DAA related disability. We don't know how many of these people are also HIV infected.
Current beneficiaries who are receiving SSI or SSDI because of DAA will be cut off effective January 1, 1997. For SSI beneficiaries, the last check they receive will be December 1, 1996. For people getting SSDI the last check will be January 1, 1997. SSI and SSDI recipients will also stand to lose their Medicaid effective 1/1/97, unless they can establish Medicaid eligibility through another category.
Until then, they will continue to get their benefits paid through a representative payee. As per current law, they must undergo appropriate treatment for their addiction or alcoholism if it is available. Their benefits will be terminated before January 1, 1997 if they fail to comply with their treatment plan.
The Reapplication and Appeals Process
Under the law, people whose benefits are scheduled to be cut off can reapply, and if they can show that they are independently disabled their benefits will continue. Reapplication must be submitted by July 27, 1996 if recipients are to be guaranteed a decision on whether they are considered disabled based on independent grounds before the cut off date.
It is very important that people who are on SSA or SSDI because of drugs or alcohol go to a clinic or see a doctor if they have any other medical problems. In order to successfully reapply for benefits they must have medical records or medical evaluations to show that they are independently disabled. Too often people don't bother to go to a doctor, or when they do, they minimize their symptoms. Symptomatic HIV or AIDS, some mental illness and many other conditions can be independent conditions on which SSA will approve benefits. Many people "self-medicate" with drugs or alcohol because they are sick with other serious physical or psychiatric conditions. Case managers and other advocates should make sure they understand the full range of conditions which makes a person eligible for SSI and SSDI.
The initial reapplication will be reviewed based exclusively on the individual's written application and medical evidence, similar to the initial review of all new applications. If Social Security determines that the person has an independent basis for disability, for example, the person is disabled because of AIDS, a notice will be issued for benefits to continue. Note, however, that if a person is determined to have an ongoing DAA problem, even if not the basis of their disability, they will be required to have a representative payee.
If Social Security decides that the person is not independently disabled the application will be denied and benefits will be scheduled to stop January 1, 1997. However, the person has a right to appeal through the complex Social Security administrative process.
For people who are receiving SSI or a combination of SSI and SSDI, the next step in the appeals process is a hearing before a disability hearing examiner who will conduct a face to face evidentiary hearing. Witnesses can testify and a person can be represented by a lawyer.
If the examiner decides there is an independent basis for disability then benefits will continue. If the appeal is denied, the individual has a right to appeal to the Office of Hearings and Appeals for a hearing before an Administrative Law Judge but benefits will not continue. People who receive SSDI benefits only (without SSI) are not entitled to the hearing by the disability examiner. They can appeal a denial of their reapplication directly to the Office of Hearings and Appeals.
Continuation of SSI and SSDI benefits
As long as they reapply by July 28, 1996, people who are receiving SSI or SSI/SSDI will continue to get benefits until the hearing examiner at DDS makes a determination or January 1, 1997, whichever is later. SSA intends, however, to conduct all hearings at the DDS level by January 1, 1997. A person who is appealing SSI can request continued benefits after January 1, 1997 while their appeal is pending. There are no mechanisms to continue benefits for people receiving SSDI because of disability based on DAA after January 1, 1997.
Continuation of Medical Assistance
One of the most troublesome aspects of this new bill is its impact on eligibility for Medical Assistance (M.A.) because along with cash assistance, all people receiving SSI and many people receiving SSDI receive M.A.
It remains to be seen if the PA DPW can be persuaded to help people to make an uninterrupted transition from SSI-related M.A. to coverage under one of the several permissible grounds allowed under state law. State law provides for automatic eligibility for those receiving cash General Assistance (by virtue of disability or participation in a D & A rehab program for 9 months) and for those 65 or over or living with children. DPW also allows coverage for those actively pursuing SSI even if they've been turned down. How all this plays out is still up in the air and may not be clear for several months.
Despite these many obstacles, people who receive letters from the Social Security Administration saying their SSI or SSDI is going to be cut off should reapply. Case managers and advocates and people living with the virus need to keep on top of the changing law. Don't give up.
Group issues AIDS virus test guidelines
In a sign of how rapidly tests that measure the amount of HIV in the blood are being incorporated into clinical practice, a research group Wednesday issued guidelines detailing how doctors can best use them. In publishing their recommendations in the journal Nature Medicine, the AIDS researchers said patients may live longer if their doctors know how much HIV is in their blood. A top AIDS researcher at the National Institutes of Health, however, says some of the recommendations were premature.
Hemophiliacs, drug companies move closer to settlement
Hemophiliacs who refused to settle claims that drug companies sold them AIDS-tainted blood-clotting products may give the deal a second look now that tight restrictions have been removed.
The four companies making the $100,000-per-person offer have lifted a demand that nearly all victims accept it or risk having it withdrawn.
The companies have proposed that the offer be sent to a federal judge in Chicago who is overseeing the lawsuits. If the judge grants approval, it will be sent out to the thousands of affected victims and their families to see if they will accept it.
"Our mutual goal in this endeavor is to provide significant, rapid support to affected members of the hemophilia community," attorney Sara Gourley said in a letter on behalf of Bayer AG of Germany, Baxter International Inc., Rhone-Poulenc Rorer Inc. and Alpha Therapeutics Inc.
"We believe this approach would permit us to determine without further delay whether this objective can realistically be achieved."
Corey Dubin, who helped broker the offer on behalf of the AIDS-infected hemophiliacs, called the companies' move a partial victory.
He said it could free some victims to continue pressing their individual lawsuits against the companies while giving a quick payment to others who are in dire financial shape or near death.
"If you want this, go for it. It's what we've been waiting for," he urged, while at the same time expressing the view that the amount was grossly insufficient for the pain caused by the contamination.
Dubin, an ex-reporter from Goleta, Calif., is among those infected with AIDS. He said the offer is still well below the $240,000 per person that the same companies are giving victims in Japan.
"They're still saying a devastated Japanese life is worth more than a devastated American life. That's the down side," Dubin said.
The offer proposed by the companies is being extended to any hemophiliac who was infected with the AIDS virus by blood-clotting products in the early 1980s, before the companies began treating the products to kill the virus that causes AIDS.
Hemophiliac groups say the companies purposely failed to protect them from the disease by refusing to treat the products with heat that would kill the virus. They also accuse the companies of making the clotting products from blood taken from people at high risk for disease such as prison inmates and drug abusers.
The companies admit no guilt. They offered $600 million plus $40 million for expenses and legal fees -- estimating that some 6,000 people were eligible for the deal.
Hemophiliac advocates say there are far more victims, meaning that the actual per person payout would be less than $100,000.
In the decade since the contamination became known, some 4,500 hemophiliacs have died.