Today marks an important milestone in our ongoing national struggle with HIV and AIDS. Twenty- five years ago, the Centers for Disease Control and Prevention issued its first warning about the disease we now know as AIDS. Today, we approve the third extension of the Ryan White CARE Act, the comprehensive legislation first enacted in 1990, for the prevention and treatment of HIV and AIDS.
In those early days, the nation failed on all levels to recognize the danger posed by this disease. Its victims suffered in silence and stigma. Shamefully, those who had the power to help did nothing.
Then, mid-eighties, a young boy’s courage awakened the nation to the very real tragedy of AIDS. A disease that had seemed distant was suddenly threatening us all, and we could no longer claim that it was someone else’s problem. We realized it was a virus that knows no color, religion, political affiliation, or income status. And I think Ryan White would be proud of the effort we are putting forth today with this compromise we’ve worked hard on for the last few months.
In 1987, Senator Hatch and I introduced bipartisan legislation calling for a comprehensive national strategy of education, prevention, and research to halt the spread of AIDS. We called on government, the public health community, and the media to all do their part in order to prevent the AIDS epidemic from continuing its’ rampage across America.
We were optimistic that we were poised to handle this challenge more effectively than at any previous point in our history. We would not lose the battle, unless we failed to wage it with wisdom, reason, dignity, and common sense.
Yet the battle continues. We mourn the five hundred thousand Americans we’ve lost to the AIDS virus. Each victim is a human tragedy – so much potential lost before its time. But we take heart in the fact that AIDS is no longer a death sentence. Through testing and treatment, people are living long and full lives with HIV. We are identifying victims earlier in the progression of the disease, and keeping them healthier longer.But we still have a long way to go. Many who live with HIV and AIDS do not have insurance to pay for costly treatments. As a result, heavy demands are placed on community-based organizations and state and local governments. For these citizens, the Ryan White CARE Act continues to provide the only means to obtain the care and treatment they need. It doesn’t matter where they live.
Americans agree. 17% of our people name HIV as the most urgent health problem facing the country, just behind cancer and heart disease. 63% say the government is spending too little at home to fight HIV and AIDS. Six in ten believe more spending on prevention and testing will help slow the spread of this disease.Four in ten say they know someone with HIV. 81% say discrimination against people living with HIVor AIDS is a fact of life in America today.
We have far to go in educating people about the disease. 37% of Americans fear the spread of HIV through kissing, 22% by sharing a drinking glass and 16% by touching a toilet seat, none of which are true.We have not finished the job we started 25 years ago.
The Ryan White Care Act began as an emergency response to the crisis in urban areas, but today it represents a national plan to provide care and support for persons living with HIV and AIDS anywhere in America- urban or rural, coastal or inland.
This bill represents a working agreement among states, cities, community-based organizations, hospitals and health providers, and persons living with HIV and AIDS their families and advocates.It responds to an evolving epidemic that continues to grow in the very cities and states that have long borne the greatest burden of disease. It’s expanding into regions of the country that have been historically less affected.
With this bill, we take a major step toward a more effective response:
- It preserves access to life-saving medications, quality health care, and support services for persons living with HIV and AIDS who have come to depend on publicly-funded systems;- It extends this system of quality care to persons with HIV and AIDS who have faced long waiting lists for medications and severe limits on their access to specialty health care;-It protects governmental and community-based institutions charged with providing this care, all of whom face growing case loads and the greater challenges of an evolving population of persons with HIV/AIDS;-It balances the needs of high-prevalence cities and states with those facing rapidly growing epidemics;-It ensures those who have been relying on their local system of care that it will continue to be there for them.and-It reassures persons seeking tests for HIV that comprehensive care and support will also be ready to serve them.And it authorizes the expenditure of $7 billion over the next 3 years to carry out this mission.This legislation is good for Massachusetts.This bill recognizes the added burden facing states like Massachusetts, that have increasing numbers of people with HIV and AIDS living in cities like Boston. It ensures sufficient resources to maintain a HIV/AIDS service system strained by a rising case load. It stabilizes funding to the state and stabilizes funding to the City of Boston because a larger portion of their award will be based on a predictable formula.The bill continues to provide significant federal support for the state medication assistance program, lessening the possibility of having to create cruel waiting lists for life-saving medications. It eliminates the uncertainty of an untried severity of need index.Both Massachusetts and Boston benefit from having the state’s HIV cases counted for the first time, for next three to four years. This will allow my state of Massachusetts to continue to focus on providing quality care and support services to people living with HIV and AIDS.At its best, America has the finest HIV/AIDS care system- one we as a nation should be proud to hold up as the gold standard of care throughout the world. Our goal in this legislation is to make it also the fairest system of care- with equal access for all, high standards for quality, and guaranteed continuity of care. At last, access to all the benefits of medical science will no longer be the result of geography.This bill is a product of effective advocacy, creative thinking, a sense of shared responsibility, and a common commitment to getting it done. The nation is fulfilling the promise of the original Care Act, first created in an era of limited treatment options and uncertain prognosis, to bring hope to persons living with the infection that they may live healthy and productive lives.It’s also complex legislation, and all our committee staff, both Democrat and Republican, deserve great credit for working long nights and weekends over the past several months. In particular I want to thank Keysha Brooks-Coley, Lauren Brumsted, Ann Gavaghan, Lisa German, Ann Grady, Elizabeth Hoffman, Bruce Lesley, Tamar Magarik, and Michael Woody. And I want to give special thanks to Shana Christrup of Senator Enzi’s staff for her diligence and desire to make the world a better place for people living with HIV and AIDS.This was a clear bipartisan effort, by the House and Senate, and I’m grateful as well to staff from the House of Representatives, including Melissa Bartlett of Congressman Barton’s staff; and John Ford and William Garner of Congressman Dingell’s staff.On my own staff, I especially commend several who worked so long and hard and well on this legislation – Alice Lam, Megan Gerson, Caya Lewis, Cody Keenan, Ches Garrison, Daniel Dawes and Michael Myers, and above all to Connie Garner, whose passion, counsel and commitment I value so highly on this and many other issues. She never once let us forget what this debate is truly about.My hope is that as we continue to improve the Ryan White CARE Act to meet the needs of this disease, the remedies we adopt will continue to come from the bright lights of science, not the dark fears of bigotry. This is an important day for people living with HIV and AIDS, and for all Americans. We must do more to provide care and support for those caught in the epidemic. This legislation will give us the time and support we need to accomplish that goal.
Laura Capps/ Melissa Wagoner (202) 224-2633