Although HIV/AIDS has been a well-supported disease, inadequate funding for HIV/AIDS programs is now an issue on every front. The Workgroup on Palliative and End-of-Life Care in HIV/AIDS acknowledges that funding levels for HIV/AIDS care are falling while costs of medical care are rising.
HIV/AIDS is no longer a lucrative fundraising arena as it once was. A decrease over the past few years in the number of donors to HIV/AIDS programs and support organizations (as a result of the perception that the disease is no longer a plague), and of volunteer staff, has resulted in less community-based fundraising. Assuring adequate funding for those who "fall through the cracks" of existing systems of care is an ongoing problem, and one that local communities cannot address alone. Adequate state and federal funding is necessary to meet the needs of those populations disproportionately affected by HIV and with little access to care and services. Compounding funding dilemmas, state Medicaid programs are suffering reductions in funding, which are impacting HIV and AIDS patients' ability to seek care and medications. Additionally, traditional Medicaid infrastructures are being sacrificed to funding reductions.
Adding to the complexity of the funding crisis, there is an important and long-overdue international focus on the importance of bringing HAART to Africa, Asia, India, South America and other resource-constrained settings. This focus is shifting attention from issues of death related to HIV/AIDS failure in the United States, and potentially jeopardizes funding for U.S. programs.
Paul is a 32-year-old man who worked in fairly well paying construction jobs yet chose not to purchase medical insurance. When he became ill he was not eligible for state and federal assistance programs. His family lived in a rural town and because they were fearful of stigma they sought no assistance in caring for him at home. He was eventually hospitalized with an acute episode, and declined rapidly. A DNAR order was written, and he was transferred to a residential hospice program. There he received palliative care and after two months recovered sufficiently to be released to the care of his parents. Although they still struggled with stigma, his parents were able to accept him back and sought the support necessary to care for him. Paul is now receiving assistance from the ADAP program, receiving medication and doing well. Palliative care helped Paul recover some quality time —palliative care is not simply hospice care.
Reimbursement issues complicate the end-of-life scenario for people with HIV/AIDS. People with limited insurance coverage may have a capitation on drug expenditures leaving them with inadequate coverage over the long haul. People with multiple psychosocial issues and other concurrent medical problems who have difficulty complying with rules and regulations often become ineligible for health care assistance. People aging into Medicare may lose access to HAART drugs, due to an inability to afford the medication, unless they become impoverished and qualify for Medicaid.
Clinicians, HIV care teams and patients alike believe that better palliative care might lead to savings in health care dollars in the long run, but reimbursement systems must be put into place to allow the introduction of palliative care services simultaneous with HIV disease-specific care. Population-based demonstration projects that will validate the potential for cost savings must also be implemented.
Superimposed on any such discussion is the failure of the United States health insurance system to provide any coverage at all for over 40 million Americans, and inadequate coverage to many millions more. The numbers of uninsured in the U.S. are rising yearly, and many states are reducing Medicaid benefits as they struggle to compensate for large budget shortfalls. Ryan White CARE funded programs, safety net health care providers, community-based service organizations and state and local initiatives cannot consistently cover gaps in coverage for essential medical care. Discussion of reimbursement for HIV-related palliative services must take place in the context of a larger discussion of inadequate access to and reimbursement for other essential medical services.
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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.