I appreciate the invitation to testify before you today. My name is Ron Rowell. I am a citizen of the Choctaw Nation and the Executive Director of the National Native American AIDS Prevention Center (NNAAPC), where I have been for the past ten years. I earned my master's degree in public health from the University of California at Berkeley in 1978 and since that time have held several professional positions, including Director of HIV Antibody Testing for the San Francisco Department of Health.

NNAAPC exists to focus attention and a concerted effort on the prevention of HIV in American Indian, Alaska Native, and Native Hawaiian communities, the care of those infected, on evaluation research, and in forming public policy.

There are four points I would like to make to you today:

1. That HIV/AIDS continues to be a serious problem for the Native American population;

2. That there are critical problems with disease surveillance for the Native population, especially with regard to HIV/AIDS;

3. That there must be a recognition of, and assistance with, the burden of cost of promising AIDS drugs on IHS-funded health care services; and

4. That the Ryan White Care Act's provision for Native Americans is problematic and needs adjustment.

The Centers for Disease Control and Prevention (CDC) published a special report on HIV/AIDS and American Indians/Alaska Natives in its March 6, 1998 edition of Morbidity and Mortality Weekly Report. That report stated that through December, 1997, there had been 1,783 reported and verified cases of Acquired Immune Deficiency Syndrome in our population. It is not known how many AI/AN are infected with HIV, the virus that causes AIDS. There is data from 25 states who report HIV infection, but these states did not include Alaska, California, New Mexico, or Washington, for example, all states with relatively high proportions of Al/AN population. What makes such a comparison important is that HIV infection data gives us a better view of where the epidemic is going. AIDS case data is a snapshot of infections that happened on average ten years ago. With the advent of protease inhibitors, fewer people are going on to be diagnosed with AIDS and this too makes AIDS case data less useful for planning. In any event, more than half of AI/AN AIDS cases were reported in rive states: California (25%), Oklahoma (11%), Washington (7%), Arizona (6%), and Alaska (4%).

The data from the states for which there is HIV reporting exhibited a couple of startling differences with reported AIDS cases. First, the number of Native adolescents infected was 5.2% of the HIV cases, versus less than 1% of the AIDS cases. Second, there are eleven percent fewer men infected as the result of sex with other men and five percent more persons infected from heterosexual intercourse. Unfortunately, there are also more people for whom no risk was identified for HIV infections than for AIDS cases.

According to the National Center for Health Statistics Mortality Tapes AIDS is now the eighth leading cause of death for AI/AN males aged 10-14, tenth leading cause for those aged 15-24, fifth leading cause for those aged 25-34, and eighth leading cause for those aged 35-44. In AI/AN females, AIDS is the eighth leading cause of death for women aged 25-34 and for infants aged 1-4. The last blinded scroprevalence survey for our population was conducted from 1989-1991. That study published in the June, 1992, edition of the Journal of AIDS estimated that approximately 2,000 to 4,000 AI/AN were infected with HIV in June, 1991. Native Hawaiians are reported only in the State of Hawaii and not nationally. Because HIV continues to infect our youth at a steady rate, it is critical to insure that HIV prevention resources continue to be available to AI/AN and Native Hawaiian HIV prevention programs through CDC.

The disease surveillance system for AI/AN is less reliable than it was five years ago, at best it is extremely poor. The MMWR report I just cited was forced to include sexually-transmitted disease data that was collected from 1984-1988 since there is no recent data. This is a critical lack of surrogate marker information that could help us do a better job of targeting limited resources in prevention where they are most needed. Misreporting of race/ethnicity is a serious problem for our population, as is the fact that our nation does not have standardized disease reporting for race/ethnicity across all states. Since resources for HIV prevention are being allocated through state community planning groups which rely on epidemiological data, the lack of attention to the need for improved disease surveillance for the Native population by the CDC suggests that no matter what the real picture of the epidemic in Native America, resources will remain minimal, and probably decline, for HIV prevention. The overall situation is compounded by the rapid restructuring going on in the Indian Health Service and the increase in tribal P.L. 93-638 compacting, making it even more of a challenge to insure adequate infectious disease surveillance. We need your help to urge the CDC and the IHS to address the problem. They are the responsible agencies of the U.S. Government for disease surveillance in Native America and it is they who must improve the present, and frankly dangerous, situation.

The Indian Health Service does not now as a matter of policy make the new and expensive AIDS drugs such as protease inhibitors available to AI/AN individuals dependent upon it or tribal and urban Indian health systems for medical care. According to IHS officials this is a matter of limited resources and competing priorities. However, Congress has made emergency assistance available to the states to cover the cost of these expensive drugs in the AIDS Drug Assistance Program, recognizing that they are the only real weapon in our arsenal to save the lives of people with HIV infection. However, Native America was not included in the ADAP program. There has been no provision for covering the cost of these drugs through the Indian Health Service or in any alternative way that would insure that those receiving medical care through IHS-funded programs have guaranteed access to these drugs. It is for this reason that National Organizations Responding to AIDS recommended a restricted line-item in the IHS budget of $19 million to cover the potential cost of these drugs that would not be available for any other use.

The cost of protease inhibitors is approximately $12,000 per patient per year. The number of patients being treated with HIV infection in IHS-funded medical service is not known for sure. A survey conducted by IHS within the last couple of months has yielded an estimate of 850 patients versus the earlier estimate of 1,600. If that number is accurate, this could lower the required investment to $10,200,000. It may be that there are ways to accomplish the goal of insuring access to life-saving AIDS drugs by Native American people in some other way and we are interested in exploring all possibilities.

We were concerned by a recent quote of Dr. Trujillo, Director of Indian Health Service, in the most recent edition of American Indian Report who was reported to have stated: "There is no cure for AIDS, and its prevention, ultimately, is an individual responsibility. An unlimited amount of funds for AIDS treatment will, unfortunately, not save a life." If this is an accurate quote, it is striking in its abdication of responsibility by an agency of the Public Health Service and its "Let them eat cake" dismissal of the needs of those who rely upon IHS-funded medical care. I wonder what the public's reaction would be to such a statement by Secretary Shalala. It is also quite surprising coming from a medical doctor. Perhaps he has not heard that the protease inhibitor drugs have lengthened the life-span of people infected with HIV considerably, even reducing levels of the virus below detectable levels in many people on the medication. Fewer people are progressing on to full-blown AIDS as a result of these drugs and thus need less expensive in-patient care. The longer we are able to keep people healthy and alive, the more hope there is that they will live to the day when we rind a cure. American Indian and Alaska Native people with HIV deserve no less to live than other Americans with the disease. Congress has recognized the burden of the cost of the drugs for the states. Now it needs to declare the same emergency for the Indian health care system and to study the issue in greater detail through the CRS.

Finally, Congress made provisions in the Ryan White Care Act for Native American care resources in its Special Projects of National Significance program. That program has a ceiling of $25 million, of which only about $1 million goes to Native Americans and the program is at its ceiling. Thus, we are asking your help to either lift the ceiling on the SPNS program or to set-aside a proportion of SPNS funds to be directed to Native American AIDS care programs. We believe the minimum should be ten percent.

In closing, let me reiterate that HIV/AIDS remains a very serious problem in the American Indian/Alaska Native community, that we need to Place Pressure upon the CDC to improve disease surveillance for AI/AN people without further delay, especially for HIV/AIDS and sexually-transmitted diseases. We must also have the resources to cover the cost of AIDS drugs for American Indians/Alaska Natives who depend upon the Indian Health Service or tribal health care services for their medical care through an expansion of the ADAP program, a restricted line-item in the MS budget that can only be used for this purpose, or some other reasonable means. Congress also needs to insure that adequate funding in the Ryan White Care Act for Native Americans under the Special Projects of National Significance provisions is available for services to Native Americans with HIV/AIDS.

So long as there is an AIDS epidemic there will be a need for organizations such as NNAAPC. It is our hope that the day will soon come when a cure is found and we can shut our doors.

Thank you