The Special Needs of HIV-Infected Patients in Harlem Wafaa El-Sadr, M.D. Chief of Infectious Disease Harlem Hospital Center The face of the AIDS epidemic has changed in recent years. Increasingly the virus attacks our urban poor, primarily ethnic minorities. The special needs of fighting the epidemic in these communities requires decisive Federal action in at least two specific areas: 1) Assurance of adequate manpower for needed care. 2) Assurance that treatment protocols are effectively available to these communities by taking note of these patients' special needs. I will describe the situation at Harlem Hospital Center because the problems we have encountered are characteristic of those of similar hospitals fighting the AIDS epidemic in urban poverty-stricken communities. Harlem Hospital Center has cared for large numbers of HIVinfected and AIDS patients since the epidemic began. The majority of these are Black and Hispanic, predominantly intravenous drug users. Women fell victim to the virus here at rates far surpassing the national averages. The patients we care for are afflicted with the tetrad of desperate poverty, drug addiction, homelessness and AIDS. Their precarious situation may be gauged by the fact that fully fifty percent of our patients are homeless. They lack a social or support network to help them cope with the disease. They also have traditionally had only sporadic access to an overburdened public health care system. Their health care provider is often the emergency room of the local municipal hospital. Thus it is that responding to even the most urgent needs of our AIDS patients in Harlem requires an effort and resources beyond that of the typical AIDS patient. The new federal recommendations for the care of HIV-infected patients stress the importance of early recognition of the infection in order to provide the patients with the most current treatments. Without specific measures that address the reality of the HIV-infected patient in the inner cities and the difficulties of providing care for them, this new initiative will bypass patients in communities like Harlem. Let us now turn to the most urgent problems in the implementation of these recommendations. I.- Who will provide care for the patients who are infected? The current staff providing care for these patients is already overwhelmed with the number of patients and the complexities of their problems. Yet we know we are only seeing the tip of the iceberg. It is estimated that only ten percent of infected people in New York City have been identified. With the emphasis on early recognition of HIV infection, more and more patients will need services. And our health care facilities are not capable of meeting these needs. Already our own program has seen over seven hundred AIDS cases and over eight hundred cases of AIDSrelated complex. Yet today we have only two staff physicians in our program. This is typical of staffing shortage in similar programs that provide care to AIDS patients. Similar to other programs the problem is an inability to fill vacancies that already exist, not only those for physicians, but also for nurses, physician assistants and social workers. We must be able to attract and retain such providers or else all programs are doomed to failure. This is one area where federal action is called for. I would like to make specific proposals for consideration: Suggestions for recruitment of health care providers 1- Establishment of an AIDS Corps, similar to the model of the recently phased out National Health Service Corps. The National Health Service Corps used to assist physicians in the payment of medical school fees and then appointed such obligated physicians to areas of physician shortage. The establishment of an AIDS Corps that directs its beneficiaries to poverty-stricken high AIDS incidence areas is of critical importance. This Corps should include physicians, nurses, physician assistants, social workers and other health care providers. Such a program would recruit persons at the time of entry into the appropriate schools, provide appropriate financial support and then place them in the designated areas. To deal with the immediate needs, health care providers already in practice can be recruited to the AIDS Corps through incentives including school loan forgiveness, housing stipends, home loan subsidies, tuition benefits etc. 2- High AIDS incidence areas with physician shortage should be placed on the high priority list for the rapidly dwindling numbers of National Health Service Corps obligated physicians and those who are in default. For example, we have sought for the past three years to get the Infectious Disease/AIDS Program at Harlem Hospital placed on this list. Even today we are in danger of losing physicians who are in default and want to serve this group of patients. This change could benefit similar institutions as well. 3- Retention of foreign physicians who are interested and committed to the care of AIDS patients: At the present time, foreign physicians are given a five year visa during which they obtain their training in this country. At the end of this period, they are obliged to leave the United States. Those physicians who make a commitment to provide these desperately needed services should be eligible to have their visas extended. There is already precedent for this: measures that facilitate the recruitment and retention of foreign nurses are in place. Together these measures will help address the acute shortage of health care providers in the AIDS treatment programs of the inner cities. Now, let me turn to the second major question regarding the implementation of the recent recommendations. II. How will our patients gain access to new treatments? The new treatment protocols have two salient aspects: at once they aim for a rigorous scientific test of the effectiveness of the new drugs; and they also provide therapy, and not least, hope, to patients whose prognosis is frightful. The availability of these protocols to patients in communities such as Harlem has been negligible. Superficially, there may appear to be justification for directing the major thrust of research elsewhere: it is very difficult to conduct these studies in communities such as Harlem. Many of our patients suffer from drug addiction; often they have no fixed address; some have young children and no one to care for them while they visit a clinic; they are not the most reliable population in terms of getting them to return regularly for therapy. All of these factors have contributed to the reluctance to implement the new protocols in these communities. Yet to thus exclude these communities from these protocols is not only inappropriate social policy, it is bad public health practice and even poor science. To exclude from these protocols, ex ante, one of the key target groups for the therapy, is to introduce uncertainty both about the clinical effect of the therapy and the ability of the therapy to be implemented in this group. The solution cannot be to exclude communities such as Harlem from these protocols, but rather to provide the human and financial resources necessary to allow the intensive programs necessary to implement these protocols successfully. I would now like to make specific proposals for consideration. 1- I recommend the establishment of a federally-sponsored committee to monitor programs that provide early interventions and treatments for AIDS patients. Such monitoring should assess the numbers of ethnic minorities recruited into such programs and quickly implement changes as needed to assure the proper representation of such patients in these programs. The committee should report at regular intervals on the federal and private efforts and funds that are specifically targeting ethnic minorities with HIV infection and AIDS. 2- Federally-sponsored treatment protocols should be made available to providers who care for ethnic minorities with AIDS. These programs should be given adequate resources to be able to successfully implement these protocols, in light of the problems outlined above. Pharmaceutical companies who sponsor treatment trials should be encouraged to follow the federal government's lead in this regard. Conclusion: The word "crisis" has been used to describe the state of the health care system for the urban poor of this country. The word is used so frequently that it fails to generate action. Yet, I feel compelled to use it when speaking of the AIDS epidemic in communities like Harlem. I am here to speak for those victims who have no voice. In spite of the scientific advances in AIDS therapy of the last few years, in communities such as Harlem we find ourselves less--not more--capable of coping with the epidemic. We are struggling to provide the quality of care that we believe should be available to all. We want to implement the new recommendations. But we can succeed only if due regard is given to the special needs of our communities. Attention to the specific proposals outlined here will be an important step forward. Thank you. Summary of recommendations: 1- Legislation to establish an AIDS Corps under the Department of Health and Human Services. This program will recruit presently practicing health care providers through incentives. It would also recruit future practitioners through financial support during their education. 2- Designation of programs that serve AIDS patients from povertystricken high AIDS incidence areas for the high priority list of the National Health Service Corps. This will facilitate recruitment of the remainder of obligated and defaulted National Health Service Corps physicians. 3- Legislation to permit foreign health care providers especially physicians who make commitments to care for AIDS patients to remain in this country through extension of their visas or granting of permanent residency status. 4- Establishment of a monitoring committee to assess the distribution of programs and funds that target minorities with HIV infection and AIDS. 5- Monitoring of the practical means by which new treatments and recommendations are being implemented in ethnic minorities with HIV infection and AIDS. Mr. WEISS. Thank you very much Dr. El-Sadr. Dr. Smith. STATEMENT OF DAVID SMITH, M.D., MEDICAL DIRECTOR, COMMUNITY ORIENTED PRIMARY CARE, PARKLAND MEMORIAL HOSPITAL, DALLAS, TX Dr. SMITH. Thank you, Mr. Chairman. I want to thank you for this opportunity and for your genuine concern over this issue. I'm David Smith. I'm currently chief executive officer and medical director of a new primary care program of Parkland Memorial Hospital for the indigent of Dallas County. Prior to that, although this isn't a kiss and tell ceremony here, I was the deputy division director of the division of special populations and program develop-we used to call SPUDS-in the Department of Health and Human Services. Prior to assuming that position in the Department, I was the medical director of the Brownsville Community Health Center in Brownsville, TX. We fondly referred to this area as occupied Mexico. In addition, I had been a National Health Service Corps recipient in Brownsville. I'd like to stray just a little bit from my prepared testimony and talk about some examples of the problems and issues that I think are facing us in this particular area. In general, I think there has been a tremendous lack of coordination of services and resources for the primary care delivery needs of AIDS patients and HIV-positive infected individuals in this country. The bottom line is that I believe that the health care delivery system is fatally flawed in a manner similar to the overall health service delivery system of this country. The delivery system is fatally flawed when it comes to the needs of the victims of AIDS. Unfortunately the modus operandi of the country, Congress, the administration, and certainly within the Department, has been one categorical funding mechanism after another which often pits one program against another. Unfortunately, it's been a special interest support philosophy where communities must somehow unravel the programs that we put out there for them. Even in the Department of Health and Human Services we found as new programs and grants came out it was very difficult for us to unravel the alphabet soup and maze of grants that were available for community based systems of care. The bottom line was there was really no proviso for a continuum of care which many feel is necessary. The concept of providing a continuum of care, that cannot only deal with the service delivery needs of the individual that's infected, but also deal with the family, sexual partners, and deal upfront with issues of prevention, and early intervention, is critical to provide the appropriate response to this problem. Something I refer to as missed opportunities occurs all too frequently. We miss the opportunity to impact, not only on improving the health care and lifestyle of an individual infected, but also on preventing further spread by not focusing on service delivery. And dealing with the family members, of course, that are dealing with |