Ryan White CARE Act

{{Short description|U.S. Act to improve care for individuals and families affected by HIV}} {{Use American English|date=June 2025}} {{Use mdy dates|date=July 2020}} {{Infobox U.S. legislation | shorttitle = Ryan White Comprehensive AIDS Resources Emergency Act of 1990 | longtitle = An Act to amend the Public Health Service Act to provide grants to improve the quality and availability of care for individuals and families affected by HIV, and for other purposes. | acronym = | nickname = {{unbulleted list|AIDS Prevention Act of 1990|Ryan White Care Act}} | enacted by = 101st | effective date = August 18, 1990 | public law url = http://www.gpo.gov/fdsys/pkg/STATUTE-104/pdf/STATUTE-104-Pg576.pdf | cite public law = 101-381 | cite statutes at large = {{usstat|104|576}} | acts amended = | acts repealed = | title amended = 42 U.S.C.: Public Health and Social Welfare | sections created = {{Usc-title-chap|42|6a|XXIV}} § 300ff et seq. | sections amended = {{Usc-title-chap|42|6a|XXIII}} § 300ee et seq. | leghisturl = http://thomas.loc.gov/cgi-bin/bdquery/z?d101:SN02240:@@@S | introducedin = Senate | introducedbill = {{USbill|101|S.|2240}} | introducedby = Ted Kennedy (D–MA) | introduceddate = March 6, 1990 | committees = Senate Labor and Human Resources | passedbody1 = Senate | passeddate1 = May 16, 1990 | passedvote1 = [https://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=101&session=2&vote=00097 95-4] | passedbody2 = House | passedas2 =  | passeddate2 = June 13, 1990 | passedvote2 = passed voice vote | conferencedate = July 31, 1990 | passedbody3 = House | passeddate3 = August 4, 1990 | passedvote3 = passed voice vote | agreedbody3 =  | agreeddate3 =  | agreedvote3 =  | agreedbody4 =  | agreeddate4 =  | agreedvote4 =  | passedbody4 = Senate | passeddate4 = August 4, 1990 | passedvote4 = passed voice vote | signedpresident = George H. W. Bush | signeddate = August 18, 1990 | unsignedpresident =  | unsigneddate =  | vetoedpresident =  | vetoeddate =  | overriddenbody1 =  | overriddendate1 =  | overriddenvote1 =  | overriddenbody2 =  | overriddendate2 =  | overriddenvote2 =  | amendments = | SCOTUS cases = }} The '''Ryan White Comprehensive AIDS Resources Emergency Act''' ('''Ryan White CARE Act''', {{USStatute|101|381|104|576|1990|08|18}}) was an act of the United States Congress and is the largest federally funded program in the United States for people living with HIV/AIDS. The act made federal funding available through contingency grants to states for low-income, uninsured, and under-insured people to be treated with the chemotherapeutic drug AZT.<ref name=HRSA/> The act is named in honor of Ryan White, an Indiana teenager who contracted HIV through a tainted blood transfusion. He was diagnosed with AIDS in 1984 at age 13 and was subsequently expelled from school because of the disease. White became a well-known advocate for AIDS research and awareness until his death in 1990 at age 18.<ref name="NYT Obit">{{Cite news |title = Ryan White Dies of AIDS at 18; His Struggle Helped Pierce Myths |date = April 9, 1990 |first= Dirk |last = Johnson |work = The New York Times }}</ref>

Ryan White programs are "payer of last resort" which fund treatment when no other resources are available. As AIDS has spread, the funding of the program has increased. In 1991, the first year funds were appropriated, around US$220 million were spent; by the early 2000s, this number had almost increased 10-fold. The Act was reauthorized in 1996, 2000, 2006, and 2009. The program provides some level of care for around 500,000 people a year and, in 2004, provided funds to 2,567 organizations. The Ryan White programs also fund local and state primary medical care providers, support services, healthcare provider training programs, and provide technical assistance to such organizations.<ref name=HRSA>{{Cite web |url = http://hab.hrsa.gov/history.htm |title = The Ryan White HIV/AIDS Program |access-date = September 11, 2007 |publisher = Health Resources and Services Administration |url-status = dead |archive-url = https://web.archive.org/web/20011127143551/http://hab.hrsa.gov/history.htm |archive-date = November 27, 2001 }}</ref>

In fiscal year 2005, federal funding for the Ryan White CARE Act was $2.1 billion. As of 2005, roughly one-third of this money went to the AIDS Drug Assistance Programs (ADAP) which provides drugs for 30 percent of people living with HIV.<ref>{{cite web |url = http://www.kff.org/hivaids/upload/1584_09.pdf |title = AIDS Drug Assistance Programs (ADAPs) - Henry J. Kaiser Family Foundation Fact Sheet |archive-url = https://web.archive.org/web/20081029090632/http://www.kff.org/hivaids/upload/1584_09.pdf |archive-date = October 29, 2008 |publisher = Henry J. Kaiser Family Foundation }}</ref> The primary activity of ADAP is providing FDA-approved prescription medication.<ref name=GWU>{{Cite book |title = Caring for 'Ryan White': The Fundamentals of HIV/AIDS Treatment Policy |first = Jessamy |last = Taylor |publisher = The George Washington University |date = August 22, 2005 |access-date = September 9, 2007 |url = http://nhpf.ags.com/pdfs_bp/BP_RyanWhite_08-22-05.pdf |archive-date = December 18, 2008 |archive-url = https://web.archive.org/web/20081218175343/http://nhpf.ags.com/pdfs_bp/BP_RyanWhite_08-22-05.pdf |url-status = dead }}</ref> The Ryan White CARE Act mandates that EMS personnel can find out whether they were exposed to life-threatening diseases while providing care. (This notification provision was included in the original 1990 act, dropped in the 2006 reauthorization, and reinstated in the 2008 reauthorization).<ref>{{cite web |url = https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6043a7.htm |title = Announcements: Reinstatement of Notification Requirements for Emergency Response Employees Potentially Exposed to Life-Threatening Infectious Diseases |publisher = Center for Disease Control and Prevention}}<br />{{cite web |url = http://www.health.ny.gov/professionals/ems/aids/occupational_exposure/ |title= Occupational Exposure to HIV }}</ref>

By one estimate, the Ryan White CARE Act saved the lives of 57,000 people through 2018. The cost of each avoided HIV/AIDS death was $334,000.<ref>{{Cite journal |last=Dillender |first=Marcus |date=2023 |title=Evidence and Lessons on the Health Impacts of Public Health Funding from the Fight against HIV/AIDS |url=https://www.aeaweb.org/articles?id=10.1257/aer.20220089 |journal=American Economic Review |language=en |volume=113 |issue=7 |pages=1825–1887 |doi=10.1257/aer.20220089 |issn=0002-8282|url-access=subscription }}</ref>

==Waiting lists== Throughout most of the 2000s, state Ryan White HIV/AIDS Program (RWHAP) Part B programs — ADAPs — were forced to place financially eligible Persons Living with HIV/AIDS (PLWHA) on waiting lists to receive financial assistance to afford medications to treat HIV.<ref>{{Cite web |url = https://www.kff.org/wp-content/uploads/2013/01/fact-sheet-waiting-for-aids-medications-in-the-united-states-an-analysis-of-adap-waiting-lists.pdf |title = Waiting for AIDS Medications in the United States: An Analysis of ADAP Waiting Lists |publisher = Kaiser Family Foundation |date = December 2004 |access-date = November 3, 2023}}</ref><ref>{{cite journal |author=Michael S. Saag |title=Which Policy to ADAP-T: Waiting Lists or Waiting Lines? |journal=Clinical Infectious Diseases |date=November 15, 2006 |volume=43 |issue=10 |pages=1356–167 |doi=10.1086/508664|doi-access=free }}</ref> These waiting lists were largely the result of insufficient funding to keep up with the demand for ADAP services by new potential patients through the congressional appropriations process through which state ADAP programs are funded.

Unlike entitlement programs such as Medicaid, the state ADAP programs are funded as discretionary grant programs. This means that Congress chooses a portion of the RWHAP Part B appropriation for the ADAP base. The amount that each state receives is determined by the Health Resources and Services Administration through the use of a funding formula that takes into account the number of PLWHA in the state or territory in the most recent calendar year.

During the 2000s, states and territories across the United States were forced to develop waiting lists that ranged from as few as 1 person to as many as hundreds of people. Other states closed registration to new applicants or instituted state-level eligibility guidelines beyond those required by HRSA.<ref>{{Cite web |url = https://www.natap.org/2002/Oct/103002_3.htm |title = ADAP Waiting Lists in 12 States |publisher = National AIDS Treatment Advocacy Project |date = October 2002 |access-date = November 3, 2023}}</ref> PLWHA who were financially eligible to receive assistance from state ADAP programs found themselves unable to receive them, forcing delays in care and treatment.

These treatment delays likely contributed to the 2006 deaths of at least three PLWHA who were on South Carolina's ADAP waiting list, the announcement of which led to nationwide calls for the appropriation of emergency funds and increased overall appropriations to end waiting lists.<ref> {{Cite web |url = https://kffhealthnews.org/morning-breakout/dr00040955/ |title = HIV/AIDS Advocacy Group Calls for Emergency ADAP Funds To End Waiting Lists in South Carolina |publisher = Kaiser Family Foundation |date = November 9, 2006 |access-date = November 3, 2023}}</ref>

By 2017, ADAP waiting lists were all but been eliminated as a result of reprogrammed funding from other parts of the RWHAP and separate Congressional emergency funding allocations between 2010 and 2013.<ref>{{Cite web |url = https://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/ |title = AIDS Drug Assistance Programs (ADAPs) |publisher = Kaiser Family Foundation |date = August 16, 2017 |access-date = November 3, 2023}}</ref>

==2006 reauthorization== [[Image:Bush signs Ryan White modernization.jpg|left|thumb|President Bush signs the Ryan White HIV/AIDS Treatment Modernization Act of 2006, in the Oval Office, December 19, 2006.]]

The Ryan White Care Act was due to be reauthorized at the end of 2005, but Congress could not reach agreement on changes, and the act was extended for one year under the old terms.<ref name=Kaiser/> Then, in 2006, the act was reauthorized for three more years, ending on September 30, 2009 with a funding level of $2.1 billion.<ref name=AP/> Prior to the reauthorization, the act allocated money based on the proportion of patients with AIDS in each region. The 2006 reauthorization changed this allocation mechanism to also consider the number of people living with HIV who do not have a clinical diagnosis of AIDS <ref name=AP>{{Cite news |url = https://www.washingtonpost.com/wp-dyn/content/article/2006/12/19/AR2006121900797.html |title = Bush Signs 3 Health Care-Related Bills |date = December 19, 2006 |first = Deb |last = Reichmann |agency = Associated Press |access-date = September 12, 2007 |newspaper = The Washington Post }}</ref>

A significant portion of funding from the act is emergency relief for Eligible Metropolitan Areas. The 2006 reauthorization redefined EMAs as cities with a population greater than 50,000, instead of previous versions which required 500,000.<ref name=Kaiser>{{Cite web |url = http://www.kff.org/hivaids/upload/7531-03.pdf |title = The Ryan White CARE Act: A Side-by-Side Comparison of Prior Law to the Newly Reauthorized CARE Act |publisher = Kaiser Family Foundation |date = December 2006 |access-date = September 12, 2007 }}</ref>

==2009 reauthorization== [[File:Obama signs Ryan White extension.jpg|thumb|President Obama signs the Ryan White HIV/AIDS Treatment Extension Act of 2009.]]

In 2009, Congress passed the Ryan White HIV/AIDS Treatment Extension Act,<ref>{{Cite web |url = http://www.govtrack.us/congress/bill.xpd?bill=s111-1793 |title = S.1793: Ryan White HIV/AIDS Treatment Extension Act of 2009 |via = GovTrack }}</ref> which was signed by President Obama on October 30, 2009.<ref>{{Cite web |url = https://obamawhitehouse.archives.gov/the-press-office/remarks-president-signing-ryan-white-hivaids-treatment-extension-act-2009 |via = National Archives |work = whitehouse.gov |title = Remarks by the President at Signing of the Ryan White HIV/AIDS Treatment Extension Act of 2009 |date = October 30, 2009 }}</ref> This bill extends the Ryan White Care Act for an additional four years.<ref>{{Cite web |url = https://www.whitehouse.gov/omb/assets/sap_111/saps1793s_20091019.pdf |title = Statement of Administration Policy: S.1793: Ryan White HIV/AIDS Treatment Extension Act of 2009 |publisher = Office of Management and Budget |url-status = dead |archive-url = https://web.archive.org/web/20091101105345/http://www.whitehouse.gov/omb/assets/sap_111/saps1793s_20091019.pdf |archive-date = November 1, 2009 }}</ref>

==2013 expiration== In 2013, the Ryan White CARE Act expired; however the Program remains as Congress continues to appropriate funding.<ref>{{Cite web |url = https://essentialelements.naccho.org/archives/669 |title = NACCHO Commemorates the 25th Anniversary of the Ryan White CARE Act }}</ref>

==Special Projects of National Significance== The '''Special Projects of National Significance''' (often abbreviated to '''SPNS''') program is a United States Department of Health program that helps to "advance knowledge and skills in the health and support services to underserved populations diagnosed with HIV infection." The current SPNS effort began in 1991 with several federal grants; portfolio of 72 grants currently address issues in HIV care.<ref>{{cite web |url = http://hab.hrsa.gov/programs/factsheets/spnsfact.htm |title = Special Projects of National Significance |access-date = March 16, 2007 |publisher = HIV/AIDS bureau }}</ref>

==References== {{reflist}}

==External links== {{wikisource|Ryan White HIV/AIDS Treatment Extension Act of 2009}} * [http://hab.hrsa.gov/abouthab/aboutprogram.html The Ryan White HIV/AIDS Program] * [https://hab.hrsa.gov/about-ryan-white-hivaids-program/part-f-special-projects-national-significance-spns-program Special projects of national significance]

Category:HIV/AIDS in the United States Category:United States Department of Health and Human Services Category:United States federal health legislation