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May 26, 2006
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Volume 34
Issue 21
 
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Congress wrong to support the current Senate version of the Ryan White CARE Act Reauthorization
Congress wrong to support the current Senate version of the Ryan White CARE Act Reauthorization
'To me, this is just another sign that part of the motivation behind this bill is payback to the Gay male community for its successful activism in the past.'

Commentary by Dennis Saxman - Special to the SGN

The struggle to survive for low-income individuals living with HIV/AIDS is about to become much harder. If a bill that was recently approved 19-1 by the Senate Health, Education, Labor and Pensions Committee passes Congress, the Seattle HIV/AIDS Planning Council will no longer be able to allocate money to social case management, housing, food banks/home-delivered meals, alternative non-Western therapies, legal services, emergency financial assistance, and psychosocial support.

Good-bye Lifelong AIDS Alliance, which stands to lose, according to its most recent press release $1.5 million dollars in funds for case management, housing and food and grocery services. I cannot imagine how it will survive as an agency with such cuts in funding. And don't run crying to your case manager when they are gone, because your case manager will only be able to help you with matters related to your medical care and its outcome.

Don't look to the state or Madison Clinic to pick up the slack: they will also be required to limit the services they provide to a list of core medical and support services defined in the bill. Interestingly, services for families, women and children will not be subject to the same requirements. To me, this is just another sign that part of the motivation behind this bill is payback to the Gay male community for its successful activism in the past.

This is the most significant event to happen to the HIV/AIDS community in many years. It will have long-range and unsettling effects on the range of services available to people living with HIV/AIDS (PLWHA). Seattle's continuum of care will be destroyed. Social case management is absolutely necessary for individuals who have AIDS dementia, are very ill, or who lack the literacy, skill or persistence to navigate a rule-laden system that can be confusing, unresponsive and racist.

Cuts in such services will negatively impact the health of PLWHA and limit the ability of PLWHA to access the remaining services. The vast majority of PLWHA scrape by at the poverty level. It will be impossible for them to replace these lost services. More individuals will become or remain homeless. More individuals will be hungry. It is only reasonable to expect that more people will die.

For many years and, with the government's approval, the Seattle HIV/AIDS Planning Council has prioritized services and allocated funds to a range of services. That range of services is called the "continuum of care." Of the Planning Council membership, more than 33% are consumers of Ryan White CARE Act services. This is all about to change with a bill proposed for the reauthorization of the Ryan White CARE Act. If it passes, no Planning Council will be required for Seattle and 33 other metropolitan areas after 2009. The voices of PLWHA will be heard less frequently and they will have less influence as a result.

So that you can appreciate the impact that the proposed changes will have on Seattle's continuum of care, I am providing the list of services and the amount of funds for each service that Seattle funded in 2006. Decisions as to what services to fund were based on data gathered from the community about what services were important to them, the barriers to obtaining those services, and what gaps that consumers and providers were seeing in this range of services. The percentage after each figure is the percentage of total Ryan White Title I dollars spent in each category.

Services include:

o Case Management - $929, 418 (18.5%)

o Housing $1,015,046 (20.2%),

o AIDS Drug Assistance Program/Health Insurance $233,721 (4.7%)

o Ambulatory/outpatient medical care $844,000 (16.8%)

o Alternative, Non-Western Therapies $113,000 (2.3%)

o Day/Respite Care for Adults (4.4%)

o Emergency Financial Assistance (0.5%)

o Food Bank/Home-Delivered Meals $232,000 (4.6%)

o Legal Services $7,000 (0.1%)

o Mental Health $300,000 (6.0%)

o Oral Healthcare $204,974 (4.1%)

o Outreach $49,500 (1.0%)

o Psychosocial support $127,500 (2.5%)

o Referral for Healthcare Services $85,000 (1.7%)

o Substance Abuse Treatment $129,592 (2.6%)

o Transportation $40,000 (0.8%)

o Treatment Adherence Support (0.7%)

If this bill passes, decisions about the range of services will no longer be made at the local level and many of these services will go away. Congress will dictate what the funds can be spent on. It proposes requiring that 75% of the funds for individuals be spent on core medical services, defined as: outpatient and ambulatory health services, AIDS Drug Assistance Program, AIDS pharmaceutical assistance, oral health care, early intervention services (counseling and testing), health insurance premiums and cost sharing assistance for low-income individuals, home health care, home and community based health services, hospice services, mental health services, substance abuse outpatient care, and medical case management (including treatment adherence services).

This bill is a boon to physicians and medical care providers. One of them in California, the AIDS Healthcare Foundation, which has been a persistent supporter of the Bush Administration principles on reauthorization, thinks this definition of core medical services is too broad, and that substance abuse and mental health should be taken off the list. Just listen to what your doctor says Timmy, and take all your pills and you will be fine - you don't need anything more. The bill requires the remaining 25% of funds be spent on support services needed to achieve medical outcomes: respite care for individuals with HIV/AIDS, outreach services, medical transportation, nutritional counseling, linguistic services and referral for health and support services.

In 2006, Seattle spent 37.9% of its Title I funds on services that would be considered "core medical services" or support services needed to achieve medical outcomes under the proposed bill. Seattle was able to do so because Washington State has been exemplary at providing medical care through the Medicaid system and through generous state funding, and by integrating medical care and related support systems into a continuum of care that other states would be wise to imitate.

Some of the Southern and more rural states have failed to make the necessary expenditures on the epidemic. They refused to recognize the existence of the epidemic in their communities or have refused to provide - some have even cut - medical care and now come crying to be bailed out by the federal government, based on an epidemic caused by years of neglect and well-entrenched racism. These states now support the Bush Administration's reforms that will punish states such as Washington who have stepped up to the plate to provide medical care and support services for PLWHA.

The conservative Republicans, who have had the most influence on the content and promotion of this bill, have successfully executed a strategy designed to divide the HIV/AIDS community of both individuals and providers along racial and regional lines: urban and rural lines. Some AIDS advocacy organizations in the Southern and rural states have supported the bill. The National Minority Health Association, the League of United Latin American Citizens, the New Black Leadership Council and the National Minority Health Month Foundation love this bill. HIVMA, the HIV Medical Association, a group of HIV doctors and other organizations of medical care providers, also support the bill. Doctors and pharmaceutical companies have, of course, been behind the bill from the start.

WHAT YOU NEED TO DO

I urge everyone to contact his or her Senators and Representatives as soon as possible about Senate Bill 2823. Usually a bill would go to a conference committee to iron out the differences between the Senate and the House and the Democrats and the Republicans. But because this bill was created, in a bipartisan and bicameral fashion, which means that both Republicans and Democrats, and Senators and Representatives, have been trying to hammer out a bill that is acceptable to both parties before going to votes in the Senate and the House, there will be little opportunity for input or debate once the changes are made to the bill. No conference committee will meet.

The Senate Health, Education, Labor and Pensions Committee had two meetings where stakeholders had some opportunity to comment on the bill and the House Energy and Commerce Committee had a meeting on Wednesday. The promoters of this bill hope to have the Senate pass this bill next week. Then, the promoters expect to send it quickly to the House where they hope to have it approved by mid-June. Supporters hope to avoid a lengthy debate on the floor of Congress.

For those individuals who are recipients of Ryan White services, you can have the most impact by telling your Senator and Representative what services you use and how important they are to maintaining your health and well-being. For supporters of PLWHA, you can remind your Senator and Representative that concern about these issues extends beyond the community of individuals most directly affected. Remind them you are a community member or a family member, friend or caregiver of PLWHA and you will be watching to see how the Senator and Representative votes on this proposed bill.

Urge them to support a level of funding that will cover the need for medical care and support services for everyone who is living with HIV/AIDS. Demand for services is one of the chief causes of the lack of medical care in other states. Senator Patty Murray, in a May 19, 2006, press release stated that: "[A]uthorization levels are insufficient to meet the increasing demands for services." If the government is going to require routine HIV testing, as the Centers for Disease Control has recently proposed, it would be unethical to fail to provide adequate funds to treat everyone who needs it.

If this country stopped spending money on ill-advised wars and tax cuts for the super wealthy, it could easily fund all the necessary medical and support services needed by PLWHA. This is not about protecting our share of the money or preserving organizations for the organization's sake: this is about preserving the lives of people living with HIV/AIDS across the country. It is critical that you take a stand and make your views known to Congress. Don't let them destroy - in a few days - what it has taken years for this community to build.



Dennis Saxman is an activist who was diagnosed with AIDS about three years ago and has been closely following the Ryan White CARE Act Reauthorization in his position as consumer member and Consumer Co-Chair of the Seattle HIV/AIDS Planning Council. This is not an official statement authorized by the Council nor is it made on its behalf.

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