As New Years’ Eve celebrations wind down in the early morning hours of Jan. 1, 2014, Americans will not only be welcoming a New Year, but also a new national healthcare plan. The Affordable Care Act (ACA), otherwise known as ObamaCare, will be implemented on Jan. 1, 2014. This year will also mark the 30th anniversary of Ryan White’s HIV diagnosis. At first thought, these two events appear to be unrelated; however the legacy of one will lie in the hands of the other.
The Ryan White Care Act (RWCA) was enacted in August of 1990, just four months after Ryan’s death. The purpose of the RWCA is to improve the availability of HIV/AIDS care to low income, uninsured and underinsured individuals and families as well as providing support services and healthcare trainings to State agencies and medical providers throughout the United States. Annually, it is estimated that the RWCA supports 2,500 medical providers and offers life prolonging treatments to over 500,000 individuals. For many affected by HIV/AIDS the RWCA has been the sole means of support for their medical, psychological, and psychosocial needs. However, with the passing of the ACA these individuals will see potentially drastic and counterproductive changes to the means in which they receive treatment.
Many unpredictable effects will be felt within the healthcare system and for those affected by HIV/AIDS. The ACA is also poised to impose effects on RWCA operations and funding as well. One of the most debated components of the ACA is the state optional expansion of Medicaid eligibility and coverage. This expansion would provide insurance coverage for many currently receiving services through the RWCA.
Since the RWCA is a “payer of last resort,” meaning it is available when all other funding sources have been exhausted those that will now be Medicaid eligible will no longer need services funded through RWCA. While in theory this may be an effective transition for some, there is fear that some individuals with HIV/AIDS will fall to the wayside in the transition period and will not have the safety net of the RWCA to fall back on.
Many with HIV/AIDS already encounter barriers to receiving treatment and find it difficult to navigate the current systems of care available to them. These difficulties can be caused by lack of access to medical care, provider discrimination, stigma and misinformation that still surrounds the disease in many communities, and lack of proper HIV/AIDS education. A completely new system of eligibility, enrollment, and coverage with the ACA has the potential to be difficult for patients and their medical providers.
To avoid lapses in coverage, providers and healthcare professionals treating those with any life threatening condition, including HIV/AIDS, will need to be well versed and educated on the new enrollment policies and procedures which begin in October of 2013. Training and education will also be required to familiarize both patients and providers on new referral, treatment, care networks and billing procedures once the ACA is in effect.
Unfortunately, providers in some communities may not have comprehensive education on the ACA or the sense of urgency necessary to provide a seamless transition to those in their care; some patients may even be lost in the system all together. Since medication adherence is critical in effective HIV/AIDS treatment, any lapse in coverage could have severe health implications on the individual.
No matter how smooth a transition or how many HIV/AIDS patients will be treated via expanded Medicaid, it is almost certain that the scope, size and significance of the RWCA will be affected. But what does that mean to the legacy of the teenager from Kokomo, Indiana who was debatably the first and most significant face of the AIDS epidemic in the 1980s and 90s? A lack of funding has already forced the Ryan White Foundation to close its doors in 2000; the RWCA is the last tangible memory for the general public of Ryan White.
In 1984 Ryan White, at the age of 13, was infected with HIV through a tainted hemophiliac treatment. He was given only six months to live. Treatment for hemophilia was not an uncommon mode of exposure to HIV/AIDS in the early 80s.
Studies show that an estimated that 90% of all hemophiliacs treated from 1979 to 1984 were infected with HIV because of the lack of knowledge of how HIV was spread.
What made Ryan’s situation unique was that at the time of his infection, the Center for Disease Control (CDC) reported that only 148 children were known to be infected with HIV in the United States. The disease at the time was overwhelming associated with gay men and drug users, not children. Many doctors, hospitals, therapists, parents and schools didn’t know how to address the fear and misinformation that surrounded an epidemic that was still in its infancy.
Ryan’s situation was also unique because of the drawn out and very public legal battle between the White family and the Indiana Department of Education. Ryan’s doctors cleared him to return to school advising that he posed no threat to the other students and staff.
Upon news of Ryan’s return teachers and parents rallied against his attendance, strong handing school Superintendent James Smith to ban his attendance. For the next nine months the White family fought the school and court system to allow for Ryan to return to school. Ryan and his family gained national attention and support of many high profile figures but also became the object of public hate and bullying.
Thirty years later, LGBT youth are subjected to a similar type of undeserved typecasting, threats and bullying.
Youth today, particularly LGBT youth, may vaguely know who Ryan White was, but may not realize how similar the struggles are to those he faced as well as the legacy he left behind. Much like LGBT youth today, who only want to be understood and accepted for who they are, Ryan was looking to be viewed as a normal 13 year old, not to be seen as the “AIDS boy” as he said he was often referenced to as.
In his 1988 testimony on HIV and AIDS to Congress, Ryan painted a picture of his longing to just be “one of the kids,” to go to school dances and sporting events and to graduate from Hamilton Heights High School in a few years. Ryan also described a much darker reality that he frequently faced. At school Ryan was forced to use separate restrooms and drinking fountains, could not enroll in gym class, and had to use disposable utensils in the cafeteria.
He was also subjected to jokes and lies that he bit people, spit on vegetables in the grocery store, and urinated on bathroom walls. Some restaurants would even throw away his dishes and utensils after he used them and people in his own church would not shake his hand. His school locker, books and supplies were all vandalized as well with the word “FAG” as well as other discriminatory remarks, a situation many bullied LGBT today can surely identify with.
Unfortunately, according to data released by the CDC on Nov. 27, 2012, many LGBT youth are also able to identify with Ryan White through living with HIV. According to the report, an average of 12,000 youth between the ages of 13 and 24 are infected with HIV every year.
The CDC found that for every demographic that HIV/AIDS data is collected infection rates are on the decline or staying steady, except for youth, particularly gay male youth. What may be most unfortunate about this finding is that in the November report, the CDC said for the first time that they believe eradicating HIV/AIDS is within reach, but if and only if new infection rates are curbed.
In the past, youth infected with HIV/AIDS were typically born with the disease. This is no longer the case. The vast majority of infections in youth are from unprotected sexual exposure. This has resulted in what many believe to be a declining sense of urgency regarding the threat posed by HIV/AIDS. Through role models and spokespeople such as Ryan White, there was a large push for education and prevention with people of all ages in the 1980s and 90s. However, as new infections and mortality rate began to fall, news coverage and funding began to decrease as well, opening the gates to the elevated new infection statistics we are facing now.
The past few years has seen a dramatic shift in priorities within the pro LGBT movement, it has become diluted with issues such as marriage equality, immigration, and women’s reproductive rights, HIV/AIDS has lost the focus of the community it once had. While these mentioned issues have their significance, it cannot be ignored that to fight these additional social issues, a generation of youth has been left to fend for itself in the battle against HIV.
Through HIV drug advertisements youth are being misled on the realities of being on medications for the rest of their lives, as well as the health, social, and psychological side effects. A study done by the Keiser Family Foundation found that the overwhelming majority of youth do not believe HIV poses a threat to them or their generation as a whole. These same youth were found to have extremely low HIV testing rates, only 35% of sexually active 18 to 24 year old reported ever being tested for HIV. Most young people in the survey also answered that they “rarely” or “never” see or read coverage on HIV/AIDS within the past year. A lack of comprehensive education is also a leading cause of new infections. A number of States still teach abstinence only in health and sex education courses, not an effective method considering the Department of Health and Human Services has reported that an estimated 47.4% of high school students are sexually active.
If this is where we currently stand with HIV prevention and education, what was the early struggle of advocates like Ryan White for? Why did Ryan White and his family subject themselves to nationwide scrutiny and hate if we are sitting back and failing our youth? What hope have we given to the world to be free of HIV and AIDS?
Ryan White passed away on April 8, 1990. In his short 18 years, Ryan White made an impact on the world and arguably the greatest impact to this day on the way HIV/AIDS is viewed. He and his mother both credited the LGBT community for its support and were able to teach countless other the virtues of acceptance, perseverance and strength through adversity. Ryan never acted as if he were a victim of HIV, his mother told The New York Times he would always say “I’m just like everyone else with AIDS, no matter how I got it.”
Ryan’s funeral was attended by over 1,500 people including Nancy Regan, Elton John, Michael Jackson, Phil Donahue, and football star Howie Long. Elton John credits his relationship with Ryan and his family as the catalyst to his sobriety and the founding of the Elton John AIDS Foundation.
He also performed “Skyline Pigeon” at his funeral with Ryan’s high school choir and served as a pallbearer with Donahue, Long and three of Ryan’s childhood friends. Michael Jackson, who gave Ryan a red Mustang, dedicated the song “Gone Too Soon” to Ryan after his death.
As we move forward toward a new era in healthcare with the ACA and the possible decline of the RWCA, government agencies, healthcare providers and prevention specialists must ensure that those with HIV/AIDS have comprehensive and effective access to services and those not infected are equipped with the knowledge necessary to stay safe and healthy. We must come together to educate our youth on HIV/AIDS and to honor the sacrifices of those who have fought the battle before us. We must not forget the mistreatment, hurt and bullying endured by Ryan White throughout his teenage years and fight to stop preventable youth HIV infections.
The day of Ryan’s funeral President Ronald Regan wrote a tribute to him in the Washington Post. The following quote from President Regan’s tribute is still relevant today as we move forward to help serve young LBGT youth and the memory of Ryan White:
“We owe it to Ryan to make sure that the fear and ignorance that chased him from his home and his school will be eliminated. We owe it to Ryan to open our hearts and our minds to those with AIDS. We owe it to Ryan to be compassionate, caring and tolerant toward those with AIDS, their families and friends.” -Former U.S. President Ronald Reagan, April 11, 1990
