The HIV Epidemic And Historical Context For “Life Don’t Have To End.”

 

Jamie L. Mignano, RN, MSN, MPH

 

In June 1981, the CDC issued a report about five previously healthy men in Los Angeles dying of pneumocystis pneumonia (Centers for Disease Control (CDC), 1981). A year later, over 400 individuals were identified with this disease – dying from pneumocystis pneumonia or a rare form of cancer, called Kaposi’s sarcoma. The disease was largely affecting gay white men. At this time, the cause of the disease was still unknown. In June of 1982, this condition became known as GRID – Gay-Related Immune Deficiency - since most of the cases at this time were in homosexual men (The New York Times, 1982). The CDC subsequently began to call this disease AIDS – Acquired Immune Deficiency Syndrome.

Between 1983 and 1984 two researchers, Dr. Luc Montagnier of France (Barré-Sinoussi, 1983) and Dr. Robert Gallo of the United States (Popovic, 1984), isolated the agent of this disease, calling it by different names. At the beginning of 1985 it became known as the etiological agent of AIDS (Marx, 1985) and in May 1986, this virus was named the Human Immunodeficiency Virus (HIV) by the International Committee on Taxonomy of Viruses (Coffin J, 1986).

After 6 years of watching friends and family members die, the first treatment for HIV was approved by the FDA in 1987. Zidovudine, commonly known as AZT, was used in high doses and demonstrated some success in prolonging life for individuals suffering from advanced AIDS (U.S. Food and Drug Administration, 2009). In the same year, President Ronald Reagan used the words “AIDS” for the first time in a public speech.

Despite the use of AZT and the emergence of another “AIDS drug” a couple of years later, this combination therapy was not fully effective in treating HIV. In 1996, a new drug class emerged, called Protease Inhibitors. These drugs bore the beginning of “Triple Therapy” or “HAART – Highly Active Antiretroviral Therapy.” When used, together, drugs from three different classes were proven to “attack” HIV in different ways and were successful in suppressing, but not eliminating, HIV. In a period of approximately ten years, the death rate from HIV disease was reduced by 50 to 80% and changed from a nearly universally fatal and catastrophic illness to what is now often a manageable chronic illness (Delaney, 2006).

The advent of HAART in 1996 was profound, however, not without challenge to the individuals living with the disease. In its beginnings, HAART brought with it significant side effects, drug toxicities and tremendous pill burdens, impacting the quality of life for individuals taking them and making it difficult to live with the disease anonymously. Many of the stories you will read in this book demonstrate courage and perseverance – overcoming the late ‘90s and early part of the new century with HIV. For many, if you didn’t die from AIDS, you suffered from the physical ramifications of prolonged immune suppression, as well as the mental and emotional turmoil associated with treatment and maintaining dignity and privacy.

 

The Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE Act)

 

The Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE Act) is the largest federally funded program in the United States for people living with HIV/AIDS. The act sought funding to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families as a payer of last resort (Health Resources and Services Administration). Ryan White and his mother found out he had HIV in 1984 at the age of 13, infected through a blood transfusion and one of the first hemophiliacs to be diagnosed with the disease. Ryan White and his mother were national advocates for HIV as a result of Ryan’s struggle with the disease – even fighting for the right to go to school! Ryan White died on April 8, 1990 – just months before the bill that bears his name was authorized. The Ryan White HIV/AIDS Program has since been reauthorized four times since 1990 and is up for reauthorization again in September 2013.

The Patient Protection and Affordable Care Act (the “ACA”), or “Health Care Reform” law passed in 2010. Starting in 2014 many of the Ryan White patients who receive care and treatment through the Ryan White program will begin to receive coverage through other programs created under the ACA. A majority will become part of the new Medicaid expansion; another portion are likely to gain coverage through individual State Insurance Exchanges (American Academy of HIV Medicine).

 

The Current HIV Epidemic in the United States

 

Since the early days, the HIV epidemic has evolved dramatically. HIV medications are available to all Americans, thanks to the Ryan White HIV/AIDS Program. Current medications have few side effects and toxicities and involve taking fewer pills than earlier drug regimens. We also have a National HIV/AIDS Strategy (The Office of National AIDS Policy of the United States, 2010) , which provides a clear plan to our nation, with measurable goals that are in line with the current epidemic. Our government continues to act by instituting policy that coincides with the most current science and research, as evidenced by our latest Department of Health and Human Services HIV Treatment Guidelines (US Department of Health and Human Services, 2012) and an Executive Order signed by President Barack Obama on July 15, 2013 creating the HIV Care Continuum Initiative that directs Federal agencies to prioritize the continuum of HIV care by accelerating efforts and directing existing federal resources to increase HIV testing, services, and treatment, and improve patient access to all three (Sebelius, 2013).

We are hopeful despite the many challenges that remain. Currently, there are more than 1.1 million Americans living with HIV, and more than 18% do not know their status. We continue to experience 50,000 new infections annually. (Centers for Disease Control and Prevention, 2013) Data indicate that only 19% of persons living with HIV in the US are virally suppressed (Gardner EM, 2011). In Baltimore, Maryland, where over 16,000 citizens are living with HIV, only 25% are retained in care and 14% are virally suppressed (Maryland Department of Health and Mental Hygiene, 2013). Data from several large randomized controlled trials indicate that it is more important than ever for both the health of the individual and the community to identify all cases of HIV and ensure that those living with HIV are retained in care and achieve long-term viral suppression. Evidence proves a mutual benefit of successful HIV treatment as a means to prevent the spread of HIV both to an uninfected partner and the mean viral load in an entire community, with proof of a decrease in HIV incidence with early and widespread HIV treatment (Cohen, 2011). These advances have led to the 2012 FDA-approval of Truvada, a well-known medication that treats HIV, for HIV-negative individuals at high risk of contracting the disease (US Food and Drug Administration, 2012).

 

HIV in Baltimore, Maryland

 

On a social level, HIV contributes to our nation’s health disparities. In Baltimore, data indicate that 1/40 citizens over the age of 13 are living with HIV and 1/29 non-Hispanic African Americans (Department of Health and Mental Hygiene, 2012). In 2009, women made up 35% of the people living with HIV and AIDS in Maryland. In 2000, less than 20% of reported cases among MSM were in MSM between ages 20-29. By the end of 2009, young men between the ages of 20-29 made up 51% of reported HIV diagnoses in MSM. In a local 2009 study of 135 YMSM, 30% tested HIV positive; 130 of these young men were African American (Baltimore City Health Department). According to the CDC (US Centers for Disease Control and Prevention, 2012), about 60% of youth with HIV do not know they are infected.

In Baltimore, persons living with HIV face multiple challenges, as illustrated by a sample of patients new to care at the JACQUES Initiative in 2012. This sample, comprised of young men who have sex with men and women, possessed the following traits in addition to HIV:

•62% had a substance abuse history;

•70% had at least one mental health diagnosis;

•45% were homeless; and

•35% had an incarceration history

 

How has the Ryan White HIV/AIDS Program impacted the lives of people living with HIV?

 

The majority of Ryan White funds support primary medical care and essential support services. The Ryan White legislation created a number of programs, called Parts, to meet needs for different communities and populations affected by HIV/AIDS (Health Resources and Services Administration). A vital portion of the Ryan White program includes the AIDS Drug Assistance Program (ADAP).

The Ryan White HIV/AIDS Program reaches an estimated 529,000 people each year. The Ryan White HIV/AIDS Program assists individuals that are un- or underinsured and have no other source of payment for services—public or private (Health Resources and Services Administration). In 2008, more than 70 percent of Ryan White HIV/AIDS Program clients self-identified as members of...