April 27, 2006- Questions of Rep. Markey at Health Subcommittee Hearing on Ryan White Care Act

Thank you Mr. Chairman.

We have before us an opportunity to build on and strengthen the successful Ryan White program. I am hopefully that we can work together to find a way to reauthorize Ryan White on bipartisan basis. But in this reauthorization we must be careful that we make improvements to Ryan White and do not gut a program that works.

Unfortunately many people in our country still go without the care they desperately need. Today you will hear members talk about the many people who slip through the cracks of the health care system and still don’t have the means to pay for their drugs and doctors or can’t afford transportation to get those appointments. And we should work to address those needs in this bill. The simple solution is to increase funds for this program so that no one has to go without care.

But if the committee is not willing to increase funding for the program to meet these desperate needs, then we must be very, very careful that while attempting to meet the needs of some, we do not tear down the health care infrastructure and dismantle systems of care that working well to meet the desperate needs of others.

However, there is a possibility that we may not reauthorize Ryan White this year and I want to get a sense of what the Administration plans to do if we are not able to reauthorize Ryan White this year.

Current law states that starting in October 2006, Ryan White funds will be allocated not only on the number of AIDS cases but also the number of HIV cases in a state.  The statute said that money will be distributed for the HIV cases in a state only if the data is “sufficiently accurate and reliable.”

  HIV surveillance has always been left up to the states. In 1998, after a long debate about how to best protect the privacy of people with HIV, Massachusetts decided to implement a code-based HIV surveillance system. This means that the state does not collect the names of people with HIV. Last year the CDC decided that they would only accept HIV data from states that collected the names of people with HIV. CDC could not force the eight states with code-based systems to change but they told the states that if they did not start collecting names of people with HIV, then they wouldn’t get any Ryan White money to take care of those people.

A couple of days ago, with the October deadline looming, Massachusetts decided that the threat of losing approximately $15 million to take care of people with HIV was so great that they had to give up their system and start building a brand new system to collect names so that they wouldn’t lose their federal funds.

I don’t think that Massachusetts should have to change their system. Massachusetts has an excellent HIV surveillance system that has worked extremely well since 1998 and the Institute of Medicine recently recommended that the CDC should alter their system to accept code-based data.

Nonetheless, Massachusetts has decided to switch our HIV surveillance system from Codes to Names. However it will take 3-4 years to develop a mature system that accurately reflects the number of people with HIV in the state. During the transition if Congress does not make any changes to the law, MA will lose significant funding. The state estimates that they will lose approximately $15 million.

So if we don’t have a reauthorization bill is there anything that the Administration can do administratively to ensure that in October 2006, Massachusetts does not lose funding for people with HIV and AIDS in the next 3-4 years that it will take them to go back and collect all the names of the people with HIV in Massachusetts?

If so, is the Administration going to do anything to ensure that people don’t lose their health care in this transition?

What does the administration recommend to people living with HIV and AIDS in Massachusetts who will not be able to get care over the next 3-4 years?

I look forward to working with members of the committee to ensure that people living with HIV and AIDS are not hurt and denied care because of this 3-4 years window where Massachusetts won’t get adequate funding to address the epidemic in our state. If nothing is done, in October 2006—that is just in a couple of months—Massachusetts and the people of Massachusetts will take a really big hit.

The people with HIV and AIDS should not be harmed by a fight over the best way to collect epidemiological data. That would make no sense.