Promoting Excellence : HIV Care: An Agenda for Change : Policy Challenges and Opportunities for Change

The message of this report, encouraging clinicians, educators and researchers to fully integrate palliative care into HIV disease management, can only become reality through policy change and commitments from those who pay for clinical care and those who fund clinical and health service delivery research.


Confronting the Challenges of Existing Policies

HIV/AIDS quiltInequities of access still exist for people with HIV/AIDS, due to insurance status, ethnic barriers or socio-economic status. The Promoting Excellence in End-of-Life Care Workgroup on Palliative and End-of-Life Care in HIV/AIDS identified the following as the most significant overriding policy issues facing the U.S. with regard to HIV/AIDS care:
· The AIDS Drug Assistance Program (ADAP), an essential component of the Ryan White CARE Act, must be maintained and expanded.
· The Ryan White CARE Act is in need of re-evaluation and re-structuring to allow better access to its programs for all people with HIV/AIDS, and to encourage the provision of palliative care concurrently with disease-modifying treatment.
· Legal barriers to optimal HIV/AIDS care for minors and adults who have lost decision-making ability still exist and must be addressed.
· Reimbursement rules and regulations often preclude the integration of palliative care into the model of care (e.g., the rule that patients must be determined to have only six months to live to, or may need to "give up" HAART to access the Medicare hospice benefit).
· As HIV becomes a chronic disease, there is a developing cohort of aging patients. Long-term coverage must be expanded.


The Ryan White CARE Act: Challenges and Prospects for Improvement

Special populations, such as the underinsured, those in correctional facilities, children and adolescents, and those with cultural beliefs and practices prohibiting full access to care, are underserved populations that can benefit from funding for health care under the Ryan White CARE Act administered by the HIV/AIDS Bureau of Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services. However, access to care is not always guaranteed. Moreover, safety net providers in community and migrant health centers, Healthcare for the Homeless Centers, AIDS community-based organizations, community and teaching hospitals and other health care entities that receive Ryan White funding seldom have training in palliative care.

Programs supported by Ryan White CARE Act funds are essential to the delivery of HIV/AIDS health care across the nation. The communities most affected by HIV are more dependent on social services and Ryan White CARE Act funds and programs, including the important ADAP medication program. Passed in 1990, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act not only funds primary care services for underserved people with HIV/AIDS, it also supports the AIDS Educational Training Centers (AETCs) and the AIDS Drug Assistance Program (ADAP). ADAP provides medications for the treatment of HIV disease, and can also be used to purchase health insurance for eligible patients.

The Ryan White CARE Act has immensely improved access to HIV/AIDS care for underserved people, but needs to be expanded to cover patient needs in more varied settings. Although the Ryan White CARE Act 2000 Reauthorization changed funding formulas for several titles, and redirected funds to reflect the diverse population now being served and to meet current needs, the act still deserves examination. Previously, Ryan White funds could not be used for the inpatient setting - except for inpatient hospice, that could be used to preclude hospitalization. For populations with unstable living situations and few caregivers, it may be necessary to house patients in a long-term care setting for a full course of antibiotics or for physical rehabilitation following a long hospital course.

Currently local planning councils play a major role in determining how Ryan White CARE Act Title I funds are distributed. But funding priorities established by these planning councils based on the historic nature of the disease may no longer be what is needed in a given community, now that treatment is improved. It may be essential to re-program or redirect funds currently allocated for other services to cover costs of pharmaceuticals used for treatment of the virus, as well as medications needed to control symptoms. An example of a way to accomplish this would be to shift a portion of Title I funding directly to the states for ADAP, and HRSA would need to specifically include medications for symptom management in the ADAP guidance. Currently, ADAP funds are awarded to each state according to a formula based on HIV and AIDS prevalence, and each state determines which medications will be included on its ADAP formulary. In this country, as in many resource-poor settings, it is fiscally sound to assure that monies are placed where the need is greatest in terms of supporting treatment and care. Guidelines for use of ADAP funds must include provision for drugs used for symptom control, e.g., pain management for ARV therapy and prophylaxis to opportunistic infections.


Issues of Guardianship

Issues of guardianship and health power of attorney need attention and careful legal evaluation, to assure that those with the patient's best interests at heart are eligible to participate in decision making. Particularly with the growing sub-population who are mentally ill, and with children in foster care, the question of who can stand in the role of decision-maker is not a trivial one.


Joe is a 12-year-old mentally challenged HIV-infected child who has been raised in foster care after being abandoned in the newborn nursery by his HIV positive mother who actively abused IV drugs. He has been fortunate to live with the same foster parents throughout his lifetime and they are the only parents he has known. The foster parents did not adopt Joe because, due to local regulations, the family would then lose their financial stipend and the Medicaid coverage needed for his care. His foster parents have provided consistent care, tests and treatment for Joe. Joe's HIV disease has progressed over the past few years, and he is now in the hospital ICU on a ventilator for an acute illness; he is not improving. The health care team needs to discuss goals of care, consideration of "do not attempt resuscitation" (DNAR) orders and consideration of withdrawal of the ventilator - but Joe's foster parents are not full guardians and cannot consent to these decisions. The local governmental foster care agency is technically Joe's guardian, but no one at the agency knows Joe personally and agency policy precludes agreeing to DNAR or ventilator withdrawal. Unless the hospital ethics committee urges a court to issue a DNAR order, or to make Joe's foster parents his full legal guardians, he will languish in the ICU and not receive the full benefits of optimal end-of-life care. Joe falls into cracks between existing policies, and is denied the benefits of timely, personalized medical decision making.

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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 for more resources.

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