Ryan’s legacy of CARE

The World Health Organization (WHO) has set a preliminary goal called “90-90-90” by the year 2020  — 90% of people living with HIV will know their status (testing), 90% of all people diagnosed with HIV as a result of testing will be linked to medical care and receive affordable antiretroviral medication (treatment), 90% of all these people will achieve viral suppression making them noninfectious (prevention).

It's an ambitious goal, especially when you consider 2020 is only three years away!

Healthcare, to my way of thinking, should be a politics-free zone, and it shouldn’t be affected by whether the president has an R or a D after his name.  Every politician should want every citizen to be cared for, but, sadly, that is not the case today.  Access to and delivery of treatment has become a matter of political debate, much to the detriment of those who need it the most.  When I refer to the politics of treatment, I’m really talking about the money involved.  Those of us living with HIV today are the recipients of remarkable, life-prolonging drugs; unless we tell you we are HIV+ you probably wouldn’t know.  This is a far cry from the way we looked in the late 80’s and early 90’s, when it was next to impossible to hide that one was infected!

But our “good fortune” today comes at a price — a very high one.  And no, thoughtful reader, that is not a metaphor.  I’m literally talking about money.  The money needed to pay for the miraculous advances in pharmacological treatments.  Staying alive is expensive!

Enter ADAP.

The AIDS Drug Assistance Programs (ADAPs) provide HIV-related prescription drugs to individuals with limited or no prescription drug coverage nationwide, with close to 200,000 enrollees in all 50 states, the District of Columbia, Puerto Rico, the US Virgin Islands, Guam, American Samoa, the Federated States of Micronesia, the Marshall Islands, and the Northern Mariana Islands.  Each jurisdiction operates its own ADAP, including determining eligibility criteria and other program elements, while all ADAPs participate in the 340B program, enabling them to purchase drugs at or below the statutorily defined 340B ceiling price.  Some ADAPs also purchase drugs directly from wholesalers or through pharmacy networks, while others earmark their Federal funding to purchase prescription drug coverage and/or pay insurance premiums, copayments, or deductibles from 3rd party insurers for people with HIV/AIDS.  The ADAP began in 1987, when Congress first appropriated funds to help states purchase the only approved antiretroviral drug available at the time — AZT (azidothymidine, a.k.a. zidovudine).  Beginning in 1990, ADAPs were incorporated into Title II of the newly enacted Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, now known as the Ryan White Program.

Ryan White Care Act

When CARE passed in the Senate, Orrin Hatch, a Republican, said, “I think this bill is a fitting tribute to Ryan White, although it is not nearly what he deserves.  But it is one of the finest pieces of legislation to come out of this body.”  Senator Hatch was a vocal and steadfast supporter of the legislation, and continues to be each time it comes up for congressional reauthorization; he made the inclusion of a funding stream to provide services in all states and US territories a top priority.  While the original House version of the bill did not fund anything other than a Federal response to the epidemic, the final version passed into law and signed by President George H. W. Bush in 1990 included what was called Title II at the time and is now called Part B.  Today, Part B of the Ryan White Program has grown into the single largest component of the Act, primarily as a result of the state and territorial/local ADAPs.

In 2017, because of the Ryan White Act, US cities, states, and other local community-based organizations within the territorial boundaries of the United States provide HIV treatments and medication to a combined total of more than half a million people each year; the program reaches 52% of all people diagnosed with HIV in the United States.  30% of Americans infected with HIV receive their medication through ADAP.

August 18, 2015 marked the 25th anniversary of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, the legislation that created the Ryan White HIV/AIDS Program.  With an annual budget of $2.32 billion dollars, the program is administered by the Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and the HIV/AIDS Bureau (HAB).  Vice President Pence has suggested Congress conduct “an audit to ensure that Federal dollars were no longer being given to organizations that celebrate and encourage the types of behaviors that facilitate the spreading of the HIV virus;” he proposed instead that the $2.32 billion dollars should only be spent on organizations that “provide assistance to those seeking to change their sexual behavior” — in other words, on the discredited quackery known as  “conversion therapy” that seeks to “turn” homosexuals into heterosexuals.  Vice President Pence is a high-functioning moron.

The Ryan White HIV/AIDS Program consists of five parts:

  1. Part A:  grant funding for medical and support services to Eligible Metropolitan Areas (EMAs) and Transitional Grant Areas (TGAs)
  2. Part B:  grant funding for the AIDS Drug Assistance Programs (ADAPs)
  3. Part C:  grant funding for local community-based organizations to support outpatient HIV early intervention services and ambulatory care
  4. Part D:  grant funding for family-centered, comprehensive care to women, infants, children, and youth living with HIV
  5. Part F:  grant funding for research, technical assistance, and access-to-care programs, including:
    • The Special Projects of National Significance Program, supporting the demonstration and evaluation of innovative models of care delivery for hard-to-reach populations;
    • The AIDS Education and Training Centers Program, supporting the education and training of health care providers treating people living with HIV through a network of eight regional centers and three national centers;
    • The Dental Programs, providing additional funding for oral health care for people with HIV through the HIV/AIDS Dental Reimbursement Program and the Community-Based Dental Partnership Program; and
    • The Minority AIDS Initiative, providing funding to evaluate and address the impact of HIV/AIDS on disproportionately affected minority populations.

Unlike Medicare or Medicaid, Ryan White Act programs are called "payer of last resort" meaning they fund treatment and medication when the patient has no other resources available.  The Act was reauthorized in 1996, 2000, 2006, and 2009.  In 2013, the Ryan White CARE Act expired; however the Program remains as Congress continues to appropriate funding.

The Act is named in honor of Ryan White, an Indiana teenager who contracted AIDS through a tainted blood transfusion given to treat his hemophilia.  He was diagnosed with AIDS in 1984 and subsequently expelled from school because of the hysteria and fear and ignorance surrounding the disease; he became known worldwide as an activist for AIDS research, awareness, and treatment, and for an end to the stigma associated with an HIV/AIDS diagnosis, a stigma with which he was sadly all-too-familiar during his brief life but which he bore bravely and with great dignity — always refusing to blame.  Or hate.

Ryan White with his Mustang

Ryan White stands in front of the red Ford Mustang given to him 4 months before he died on his 18th birthday by Michael Jackson

Ryan White died of AIDS on April 8, 1990.  The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was signed into law four months later by President George H. W. Bush on August 18, 1990.

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