A Little More Normal
“My entire world sort of clicked off. I didn't hear anything. I didn't see anything. And the only thing that I could think of was: I'm going to be dead in six months.”
This is James, looking back at 1988, the year the Dow closed above 2100, the Hubble Space Telescope was turned on, and James was diagnosed with HIV. “I'm a survivor of domestic violence, child molestation, depression,” he says with some pride. Even so, James knew he was about to enter the toughest fight of his life.
After all, while HIV/AIDS awareness was still relatively new in 1988, James was seeing growing evidence of something much bigger. “First, there would be the fever and then there was the immense weight loss along with the Kaposi’s sarcoma lesions that would appear on the body,” James says. “A person would die and sometimes it would happen over a week.”
James also explained that, since doctors had just begun researching HIV, there were almost no treatment options available. “The medication at the time was fairly nonexistent,” he recalls. Of the side effects, he says “the medication that they had at the time was even worse than the disease itself.”
Thanks to years of investment and hard work by America’s biopharmaceutical companies, and other health care stakeholders, things have changed dramatically – and patients likes James, who can look back 29 years in near-disbelief, are proof.
Brian, a researcher developing HIV/AIDS medications for nearly 20 years, is astounded by how far treatment has come. “The progress is actually quite miraculous,” he says. “In the early days, the goal was just keeping patients alive as long as possible. Resistance was rampant and the regimens were not tolerable for many patients, but the alternative was death. Frankly, both options were horrible. Fast forward 30 years and now we have several one-pill, once-a-day treatment options for patients and their physicians to choose from.”
“They can live a normal life – a healthy, successful life.”
Today, the outlook has never been more promising with more than 50 medicines and vaccines in development to treat, prevent, or help with the disease impact of HIV/AIDS.
As Brian explains, treatment is no longer simply about survival, but enabling individuals to regain the quality of life they once had. “It is extremely motivating when we hear that a physician has a patient who is benefiting, that the new [medicines] we've brought forward have allowed the patient to regain weight, reverse the progression of their disease and essentially have a new life ahead of them.”
James understands the sentiment personally – and recognizes the network that helped him back. “My family, my doctors who were trying to make sure that I got the right medications to keep me going,” he says, “the programs that helped me find housing, sent me back to school, and helped me to better myself.”
“I have a great doctor. Most of doctors that I've had have been very good and this last one has been just fantastic. We have gotten me to a point now where my numbers are just fantastic.”
James’s experience motivated him to help others. He began volunteering at San Francisco City Hall by taking calls, helping around the office, and any job in between. This volunteer work led to HIV community activism – and a run for office. While he may not have won his election, James continued to give back to others, providing the same kind of support he is so thankful to have received.
James recently lost his partner to AIDS and his brother to cancer. Still, he knew he had to keep moving forward.
“The thing that gives me hope is just being able to wake up every day,” he says. “I will get back up.”
Brian knows there’s still a long way to go. “There are people who are alive today because of the work that we do,” he acknowledges. “The work is often very quiet, very slow moving, very frustrating. But over time it has a major impact on thousands of people.”
And Brian sees even greater hope ahead.
“I don't take no for an answer,” he says. “The power of imagination and innovation is incredible and I see it every day in the eyes of my colleagues.” “Science is real and the key to solving problems. We just need to find the right people to bring together, collaborate, and find a solution.”
James is grateful for Brian’s – and many other researchers’ – tenacity. “I'm not sure how to explain it any better,” he says, “than it just makes me feel a little more normal.”