Jaymes Young has been living with HIV for 13 years, and although his diagnosis came nearly a decade after Ryan White’s death, Young remembers the development of effective HIV medication.
Now, following more than three decades of HIV and AIDS research, treatments and medication have given the average North American diagnosed with HIV a life expectancy of 63 years, according to a 2013 study done by the North American AIDS Cohort Collaboration on Research and Design. That figure is a 15-year increase from life expectancies in 2000, according to the study.
“In the 25 years since Ryan White’s passing, the most dramatic change of course has been the transformation from lethal virus to chronic health condition,” said Young, who is employed by the Damien Center in Indianapolis, an HIV and AIDS support facility. “The average age of a young person diagnosed is very near the lifespan of his or her cohorts.”
The miracles of medication
Throughout the late 1980s and early 1990s, HIV and AIDS, both relative newcomers to the medical community and general public, were mostly treated with a variety of experimental and trial medication – most notably AZT, or azidothymidine -- which enabled the slowing of HIV replication, but was also susceptible to virus resistance.
Despite its shortcomings, which also included transient anemia and a loss of energy, AZT became the preferred and most widely-trusted form of medication. The popularity of the drug increased in 1987 when it became the first HIV treatment drug to be approved by the U.S. Food and Drug Administration.
Originally, due to its limitations, the drug had to be given in uncommonly high doses, usually 400 mg every four hours. But as the HIV and the medical community moved into the new decade, AZT’s reputation as an acceptable form of solitary treatment began to erode.
“The first thing that we learned back in the 1990s was that one-drug treatments did not work,” said IU Health HIV/AIDS nurse practitioner Sylvia Wiley. “We realized that we needed to do a combination of three drugs so that resistance can be dealt with when it is encountered.”
That combination – sometimes referred to as a “cocktail” – is medically known as HAART, or highly active antiretroviral therapy. HAART, a customized combination of different classes of HIV medication, is not only more efficient, but much less toxic.
“At the time I was diagnosed, the three components of Atripla were just beginning to be prescribed together as a cocktail,” said Young. “Eventually, Atripla became the first one-pill, once-a-day regimen. In the years since, this has led to once-a-day regiments being improved.”
Atripla, which was approved by the FDA in 2006, became the first one-pill-daily regimen for the treatment of HIV-1 infection in patients over the age of 18. Most importantly, it became a good example of what a three-drug combination can do for HIV treatment.
“If patients take all three drugs, then we have high rates of suppression,” said Wiley. “And while patients use to take medicine three to four times a day, now they only take one very safe pill each day. We still use AZT on a limited basis, but because we now have better drugs, we use it in the three-drug combination.”
As medical knowledge of HIV has increased since the move to HAART, so has the effectiveness of the three-drug combination. To ensure maximum efficiency, the pill always includes medication from a combination of antiretroviral agent classes.
Those classes are as follows: nucleoside reverse transcriptase inhibitors (NRTIs); nonnucleoside reverse transcriptase inhibitors (NNRTIs); protease inhibitors (PIs); integrase inhibitors (IIs); fusion inhibitors (FIs); and chemokine receptor antagonists (CRAs).
For example, Atripla combines the active ingredients of one NNRTI and two NRTIs.
“The newer drugs coming to the market are very innovative in that they focus not only on the effectiveness against the virus but quality of life of the patient as well,” Young said. “They are more tolerable, have less short-term side effects and so far, the indication is that they are less harmful to the body.”
However, the drugs, which have shown the ability to strongly limit HIV’s destruction of the human body, must constantly be monitored and adjusted as they deal with the intricacies of the disease.
“We choose drugs from at least two different classes and each drug works on a different part of a T cell and viral replication,” said Wiley. “We also have to look at the genotype, which gives us a picture of the virus. If they have acquired mutations for the virus, they may already be resistant to the medication. It is a very intelligent disease and it likes to hide. We can suppress it, but it will still be hiding in there.”
Patients often replicate the disease, Wiley said, which, in addition to the search for a vaccine, is a large part of what the development of new medication is aimed at eliminating. And without the move away from AZT and into the more efficient three-drug treatments, HIV patients would never have seen the extended life opportunities they are now been afforded.
The cost of treatment
There has always been one constant concern for HIV patients, and as medicinal opportunities grow, the issue of cost has remained at the forefront.
“The cost of medications are extremely high and out of reach for most living with HIV without benefits provided through the Ryan White Act,” Young said. “This has not changed since the beginning of the epidemic. HIV medication can cost as much as $2,500 per month without insurance coverage and remains burdensome with insurance copays.”
The average cost for HIV treatments is still a major barrier. In fact, the average annual cost of HIV care in the antiretroviral era is estimated to be $23,000, according to the Centers for Disease Control and Prevention.
And while insurance companies pay a large chunk of that total for many patients, the cost of treatment is still viewed as a life and career inhibiting factor.
“Without assistance, this cost is often a barrier to medical care and it serves to keep individuals dependent on social services,” Young said. “For many like myself, there comes a time when an individual living with HIV must decide between moving forward in her or his career and taking that pay raise or remaining eligible for state HIV medical service programs that cap off at 300 percent of the federal poverty level.
“I know of many individuals who choose to stifle their talents and potential for fear of losing the ability to access medications,” he added.
However, as Young referenced, there are opportunities for patients to receive financial help.
The Ryan White HIV/AIDS Program, which was first authorized in 1990, is funded at $2.32 billion in fiscal year 2014, according to the U.S. Department of Health and Human Services. According to the department’s website, the program “works with cities, states, and local community-based organizations to provide services to an estimated 536,000 people each year who do not have sufficient health care coverage or financial resources to cope with HIV disease.”
This program, along with other localized opportunities, can help to partially relieve the cost-related stress placed on patients, especially those who find themselves in low income brackets.
“If you have HIV and an income below $32,000, the state considers you high risk and offers health insurance,” Wiley said. “There is no deductible or copay with the state sponsored plans; they are marketplace plans that the state purchases.
“We have had some patients who purchase marketplace plans on their own, and if there is a $5,000 deductible, the big drug companies will pick up a lot of that,” she added.
To assist HIV-inflicted Hoosiers, the Indiana State Department of Health has developed four plans within its HIV Medical Services Program, including AIDS Drug Assistance Plan, or ADAP, which assists patients with obtaining FDA-approved drugs if there is a waiting period before the program’s other insurance plans begin.
“The program provides both short- and long-term benefit packages covering basic health care services as well as the range of HIV-related medical services and medications, including all FDA-approved highly active antiretroviral drugs,” says the ISDH’s website.
In addition to insurer- and state-sponsored programs, there are often a variety of social services available to those afflicted with HIV, including Young’s current employer.
“There are many patient assistance programs available from drug manufacturers and the Damien Center has a program to assist with copays as well,” Young said. “My hope is that we are starting to turn a corner in this regard.”