Mr. WEISS. Thank you very much, Dr. Brown. Dr. Jellinek. STATEMENT OF PAUL S. JELLINEK, PH.D., SENIOR PROGRAM OFFICER, THE ROBERT WOOD JOHNSON FOUNDATION Dr. JELLINEK. Thank you, Mr. Chairman. I very much appreciate the chance to appear before the subcommittee today to tell you some of what I think we are learning through our AIDS-related grants at the Robert Wood Johnson Foundation, where I am a senior program officer. The Robert Wood Johnson Foundation made its first grant in this area in late 1985 and, since that time, we have made over 100 AIDS-related grants, totaling more than $45 million, which is more than half of all the private foundation money for AIDS to date. Our AIDS grants, which account for about 15 percent of our total pay out over the last 3 years, are mostly in the areas of services, prevention, policy research, and public information. Today, I would like to focus especially on what we are learning from our grants to improve services for people with AIDS. The first point I want to emphasize in this connection is that AIDS is definitely outgrowing its status as just a local problem confined to a handful of our major cities and is now truly becoming a national problem. We have all seen this coming in CDC's data and in the GAO's report a couple of years ago, but what really brought the point home for us at the foundation was the response we got to an unusually open-ended call for proposals that we issued last year for innovative AIDS prevention and service grants. On July 1 of last year, we received over 1,000 proposals from 48 States, the District of Columbia, and Puerto Rico requesting a total of over $2 billion. That is more than five times the foundation's total annual payout for all of its program areas, and it was by far the largest response we have had to any call for proposals since we became a national philanthropy in 1972. What impressed us even more than the magnitude of the response was the incredible diversity. Red Cross chapters, Girls Clubs, Salvation Army chapters, schools, churches, hospitals, unions, grassroots groups of every kind and from every kind of community were looking for help. Small towns in rural Montana, Georgia, and Oklahoma; bigger towns like Akron, Mobile, and Trenton; suburban areas like Westchester, and Nassau County; and almost all of our big cities, not just New York, San Francisco, and Los Angeles. The message for us was clear. AIDS has truly become a national problem and main street is mobilizing to try to respond. After a massive review process involving more than 100 outside experts, the foundation last December awarded 54 grants totaling $16.7 million under this program. This was actually our second major national program in AIDS and for the rest of my time, I'd like to focus on our first multisite AIDS program, which we called the AIDS health services program. The AIDS health services program is a 4-year, $17.2 million national demonstration program started in 1986 that provides support to 11 cities to develop community-based systems of care for persons with AIDS and AIDS-related illnesses. It is currently in its third year of operation. The purpose of the AIDS health services program is to show that by organizing its resources into a comprehensive system of in-hospital and out-of-hospital community-based care, a community can provide the full range of services that people with AIDS need in their home communities, while at the same time, reducing some of the pressure on the communities' hospitals, especially the public hospitals. The model for this was the kind of systems approach that had emerged spontaneously in San Francisco a few years earlier, although we made it clear from the start that every community had its own specific set of needs and resources and, therefore, our program would not be Kentucky Fried San Francisco. What have we learned after 3 years in the field with this program? Well, I'd say there is good news and there is some not so good news. The good news is that the community-based model of providing AIDS care truly seems to work. The 11 projects funded under this program have already served well over 12,000 people with AIDS and another 20,000 collaterals, which includes people with AIDS-related illness, people who are currently asymptomatic, and their families and friends. Hospital stays are getting shorter in all of these communities, although that is also in part due to improvements in treatment. It is difficult at this point to untangle the relative contribution of both of those factors. Perhaps most important is the fact that the community-based approach seems to work in very diverse kinds of communities and with very different kinds of caseloads, not just San Francisco, but Dallas, New Orleans, Seattle, Nassau County, Miami, Atlanta, and even places like Jersey City, Newark, the South Bronx, and Belle Glade, places with large numbers of drug-related cases. This is especially important given the recent shifts in the epidemic, to which some of my colleagues have testified. Not only are we seeing more cases among intravenous drug users, their sexual partners and their children, but now crack is coming into the picture. The impact on our inner cities may be even more severe than originally anticipated. The fact that our projects have been able to serve even this very difficult to reach population underscores the resilience and the potential value of the community-based model of care. The not so good news is that these projects are already stretched dangerously thin, with case managers in some communities already carrying caseloads of almost 200. As things currently stand, it is not at all clear how they will even continue to operate at their current levels, let alone expand their services to meet the growing need. Our grants under this program will end next year and HRSA's funding has remained essentially flat since 1986, despite the growing number of cities eligible for their funds. Meanwhile, the caseloads have continued to rise very rapidly. The cases have become more complex and now there is the prospect of large numbers of presymptomatic individuals coming in for testing and counseling and preventive therapy. Some States have obtained Medicaid waivers to help cover some of the home and community-based services that people with AIDS need, but this has been only a partial solution, as we have seen in New Jersey which has a waiver, but still has many holes in the service system and a substantial number of people who are not covered. To sum up my main points very briefly, our experience indicates first of all that AIDS is now clearly becoming a national problem that is placing more and more of a strain on the health care systems of communities all over the country. Second, the community-based systems approach of AIDS care seems to work, providing a broader range of services while at the same time helping to alleviate some of the pressures on the hospitals in those communities. Third, this approach works not only in San Francisco but in places as diverse as Dallas, New Orleans, Belle Glade, and Jersey City. Finally, the question of whether or not the community-based model becomes a permanent part of the Nation's health care system lies beyond the scope of the foundation's activity and will ultimately have to be determined by those who finance the system. Thank you, Mr. Chairman. [The prepared statement of Dr. Jellinek follows:] TESTIMONY U.S. HOUSE OF REPRESENTATIVES by Paul S. Jellinek, Ph.D. The Robert Wood Johnson Foundation Princeton, NJ 08543-2316 Mr. Chairman, thank you for inviting me to testify today on the subject of treatment and care for persons with HIV infection and AIDS. My name is Paul Jellinek. I am a Senior Program Officer at The Robert Wood Johnson Foundation with a background in health economics. My principal areas of responsibility at the Foundation include AIDS, substance abuse and child and adolescent health. 100 to Beginning in 1985, The Robert Wood Johnson Foundation has made over AIDS-related grants totaling over $45-million, making it the single largest source of private philanthropic funding for AIDS to date. As the nation's largest private philanthropy dedicated exclusively to health care, the Foundation is active on a wide range of health-related issues in addition AIDS, including child and adolescent health, chronic illness and disability, drug and alcohol abuse, mental illness, health care for the homeless, organization and financing of health services, quality of care, health manpower, and the impact of medical advances. With a total annual payout of approximately $100-million, AIDS-related grants accounted for approximately 15 per cent of the Foundation's overall grantmaking during the three-year period from January 1986 to December 1988. This constitutes over one-half of all private U.S. philanthropic spending for AIDS to date. For the record, a copy of the Foundation's most recent annual report is available for your staff. In its AIDS funding, the Foundation has focused primarily on the areas of health services delivery, prevention, policy research and public information. It has issued two competitive calls for proposals the AIDS Health Services Program in 1986 and the AIDS Prevention and Service Projects in 1988 and has awarded numerous single-site grants in response to unsolicited requests, ranging from $5,000 for a targeted prevention program in Manchester, New Hampshire, to $4-million in support of the "AIDS Quarterly" public television series produced by W-GBH of Boston. In my testimony today, as you have requested, I will focus an some of the lessons we have learned so far through our AIDS-related grants, particularly with respect to the delivery of needed health services to people with AIDS and AIDS-related illnesses. 22-690 0 - 90 - 4 - 2 The first point to emphasize is that the need for services is continuing to escalate dramatically, not only in those cities where the epidemic first struck - New York, San Francisco, Los Angeles, and Miami but in communities all over the country. In response to the call for proposals the Foundation issued last year for innovative AIDS prevention and service projects, we received over 1,000 proposals from 48 states, the District of Columbia, and Puerto Rico (the remaining two states came in after the deadline). The total amount of funding requested was in excess of $500 million, more than five times the total annual payout for the Foundation for all of its program areas. Following an intensive review process that involved over 100 outside consultants, the Foundation awarded 54 grants totaling $16.7-million. --- The response to this call for proposals from over 1,000 widely diverse community organizations, religious groups, hospitals, health departments, school systems, civic groups, labor unions, and others from equally diverse mix of urban, suburban, and rural communities was the largest in the Foundation's history. What impressed us, beyond the sheer magnitude and diversity of the response, was the clear signal that Main Street was mobilizing to respond to the epidemic. While the CDC's figures gave us the epidemiologic overview, these proposals showed us for the first time how communities of every kind all over the country were being affected by AIDS and what they were doing to try to respond. Another somewhat narrower window on the escalating need for services has been through the Foundation's first multisite AIDS initiative, the AIDS Health Services Program. Through this $17.2-million program, the Foundation has been providing support to 11 cities around the country since 1986 to develop comprehensive community-based systems of care for persons with AIDS. In all 11 cities, there have been dramatic increases in the caseload, and our grantees have directly experienced the impact of these increases on their service delivery systems. For example, in Atlanta the number of cases has jumped from 432 in November 1986 when their grant started to 1,690 in April of this year, an increase of 291 percent. In Palm Beach County, Florida, the caseload rose from 225 to 857 (281%); in Newark, from 658 to 2,726 (314%); and in Seattle, from 204 to 940 (360%). In New York City, the percentage increase was smaller (140%), but the total number of cases is now in excess of 20,000. These figures do not include the many cases of AIDS-related illness or unreported AIDS that do not show up in the CDC reports but do show up in the clinic waiting rooms in these cities. - The growing magnitude of the problem has placed increasing demands on the health care system in many communities. by 1987, AIDS patients accounted for upwards of 8 percent or 1 out of 12 of the total hospital days in New York City, and, looking ahead, New York officials expect the number of hospital days for AIDS patients to triple by 1991. The situation is not much different in San Francisco, Miami and Newark, and other cities are not far behind. The strain is especially severe for the municipal hospitals, which generally take responsibility for large numbers of Medicaid and indigent patients. New York City's public hospital system contains only 16 percent of the city's medical-surgical beds, yet in 1987 it accounted for over one-third of the city's total hospital days for AIDS. |