The need for continued funding and dialogue in HIV/AIDS plan

The Philadelphia Eligible Metropolitan Area HIV Planning Council has adopted a revised funding allocation in response to the Health Resources and Services Administration’s reduction of Philadelphia’s Ryan White Part A (Title I) award by $2.4 million in May 2007.

This new allocation plan by the Philadelphia Planning Council is supposed to preserve funding for “core” medical and social services, yet precipitously terminated the funding mid-year for psychosocial support, transportation, respite, nutritional counseling and home healthcare funded grants as of July 31. The Ryan White Funding period is March 1, 2007-Feb. 28, 2008.

HRSA has defined core services as outpatient and ambulatory health services, pharmaceutical assistance, substance-abuse outpatient services, oral health, medical nutritional therapy, health insurance premium assistance, home healthcare, hospice services, mental health services, early intervention services and medical case management (including treatment adherence services).

Keystone Home Health Services and Keystone Hospice have been the primary providers of HIV/AIDS home care and hospice services in the Philadelphia region since 1996, and began as a subcontract provider for the Philadelphia Health Management Corporation in 1992. Keystone has a long reputation of advocacy and innovation in care options and for recognizing trends in AIDS-related illnesses and symptoms. (Keystone Home Health Services and Keystone Hospice are not affiliated with any insurance company and remain as freestanding, female-owned and operated agencies.)

The Philadelphia region has benefited from over 15 years of Keystone home healthcare and 12 years of hospice services provided to individuals who would otherwise be repeatedly hospitalized or placed in long-term care facilities.

According to the Centers for Disease Control, HIV/AIDS Surveillance Report, racial minority groups represent almost three quarters of new AIDS cases: These are the home-care patients partially or fully funded using HRSA/Ryan White funds. In 2004, African Americans accounted for 43 percent of all AIDS cases reported during the year, even though they make up just 12 percent of the population. Although Hispanics make up only about 14 percent of the population of the United States and Puerto Rico, they account for 18 percent — almost 164,000 — of the more-than 886,500 AIDS cases diagnosed since the beginning of the epidemic.

The HIV/AIDS epidemic is a serious threat to the Hispanic community. In addition to being a population seriously affected by HIV, Hispanics continue to face challenges in accessing healthcare, prevention services and treatment, according to the CDC.

Racial origin does not make anyone automatically more or less susceptible to HIV infection: There are other reasons for this imbalance. Poverty is one factor, which explains the increased HIV prevalence among African-American, Hispanic and other minority populations. Studies have found an association between higher AIDS incidence and lower income. This is true of Keystone’s population, where minorities represent 72 percent of total AIDS cases with numerous other issues related to drugs, alcohol, mental health, homelessness and incarceration.

In this respect, the socioeconomic circumstances that precipitated this change in demography require a paradigm shift by the Philadelphia EMA HIV Planning Council to fundamentally re-envision its planning process. The changing face of HIV/AIDS requires a different model for collecting comprehensive and reliable data for defining needs, better identifying ethnic disparities and dramatically improving cultural competencies. The majority of individuals most in need of Ryan White funds for home care and hospice services do not have a voice at current planning council meetings, yet they represent some of the most medically underserved and vulnerable of our society.

We believe that decisions made by members of the planning council to “zero out” services mid-year were based on bad science in a fatally flawed manner as defined by the 75-percent rule for determination of need and funding.

We observed meetings where half of the consumers attending were Spanish speaking, yet there were no handouts in Spanish; consumers’ questions were not answered but deflected by council members and staff provided information at times that was inaccurate in defense of a flawed needs analysis.

The simple fact that HIV/AIDS clients, many of whom have minimal reading and writing skills, were asked to fill out an extensive 20-page questionnaire demonstrates serious concerns on how effectively needs have been determined based on cultural competency.

It is imperative that we understand that demography is destiny and begin to respond to the challenges of this disease within our EMA region more comprehensively and as a unified community.

Instead, we have seen the planning council building an island driven by self-interest that federal financial shifts continue to erode. As we lose funding in the region, we abandon the people with less influence to drown. Eventually, we all will drown.

By reallocating services based on funding cuts, we have created the equivalent of sandcastles to hold back the ocean. As a community, we must stop and reflect on how vital every part of the HIV/AIDS continuum of care services is to those we serve.

Not unlike a large family with limited funds, we must make sure everyone has food on their table.

And yes, there will be times and hard decisions that we will have to make to improve on economies of scale, but not at the expense of destroying a whole continuum of care that services the most fragile and disenfranchised of our community.

We must unite and show the solidarity HIV/AIDS advocates once had. This starts with open discussions and making sure there is representation for all. It also requires a willingness to see that which we cannot see — just because it does not affect us does not mean it does not exist. If we do not protect the integrity of a continuum of care, we can only expect a much broader negative impact for the future of our community as a whole.

Gail Inderwies is the executive director and president of Keystone Hospice and Keystone House, nonprofit agencies that provide end-of-life hospice and in-home care in Philadelphia, Montgomery, Delaware and Bucks counties. The hospice can be reached at (215) 836-2440 or www.keystonecare.com.