Only two years ago, David Flanagan watched his son Josh die a death reminiscent of the early 1990s -- the "plague era" of HIV in the U.S.
This week, David is riding his bicycle 545 miles down the California coast to tell his son's story. He is participating in AIDS/LifeCycle, which raised a record $16.4 million this year to help support San Francisco AIDS Foundation and HIV/AIDS-related services at Los Angeles LGBT Center.
A Late Diagnosis
When Josh returned to his hometown of Clifton, Texas, with his partner Bill in June 2013, David said that he and his wife Talana noticed their son had lost a lot of weight. But they knew Josh had been working out. They thought he looked pretty good slimmed down.
David recalls thinking his son must have been homesick to have moved away from Fort Lauderdale, Florida, where he had spent 18 months. Josh and his partner both had good jobs there with Whole Foods Market. Like so many people, Josh did not buy the expensive COBRA coverage when he left Whole Foods.
It didn't take long before the Flanagans noticed that bad diarrhea sent Josh to the restroom every 30 minutes. Then, he developed oral thrush and a dry cough. "We thought maybe it was a tropical bug from Florida," David recalls.
Josh went to a hospital in nearby Waco, Texas, to be checked out. "The thrush didn't raise an alarm bell. They never said anything [at the hospital] about anything in his mouth, or you need to get checked [for HIV]. A lot of these things we found out later," David said.
Josh's health didn't improve. He constantly was exhausted. So a couple of weeks later, the Flanagans took Josh to a clinic in Oklahoma.
There, he finally was tested for HIV, and the test came up positive. Five months later, Josh was dead.
A Rough Road in Treatment
According to David, Josh had difficulty accessing HIV medication even after landing in a hospital following his diagnosis. A recent study, START, confirmed what many doctors have been saying for a long time now -- people should be given antiretroviral medications the moment they receive an HIV diagnosis.
In August 2013, Josh was diagnosed with PCP, the most common opportunistic infection for people living with HIV. PCP is fatal in only about 10% of HIV cases today, however, due in part to the effectiveness of antiretroviral therapy. But even with a PCP diagnosis, obtaining HIV medication for Josh was difficult, David said.
Josh was eventually provided total parenteral nutrition (TPN), but by then, a thin Josh had progressed to a wasting Josh, and it was too late. TPN needs to be used early to be effective, but often is not because of the cost, which can be thousands of dollars per month.
Death at Home With His Partner, the Dogs and The Voice
On a cold day in November 2013, the hospital released Josh, David said. He went home to his partner. They lived in a home owned by David and his wife, who lived nearby. They watched The Voice, and David remembers his son tapping his toe along with the music. He says he urged Josh to eat some of his favorite dish that his partner made him, but Josh responded, "Dad, it's hard just to live." David said Josh was happy to spend that night in his own bed with his dogs.
The next day, David went into town to buy a generator, because Josh was hooked up to some electrically powered medical equipment. A storm was coming in.
When he returned, Josh's partner was doing chest compressions on the love of his life. As an ambulance arrived and paramedics placed Josh on the gurney, his mom showed up.
She saw Josh's limp arm hanging from the stretcher. "By then, he was gone," David said. "My wife just went nuts."
Why He Is Riding
The Flanagans said they are participating in AIDS/LifeCycle because what happened to Josh still is happening in small towns across America. A fundamental lack of understanding about HIV still exists in some places, as well as a lack of knowledge or training in HIV testing, treatment and care.
David readily admits that he's not exactly prepared to ride a bicycle through a large portion of the Golden State. But he's not too worried about that. When hundreds of people from Josh's tiny town packed the oldest running movie theater in Texas for his son's memorial service, it showed him people care. They just need to know more about HIV.
So he's going to suffer through the soreness of the physical exertion his body probably is not prepared for. It's worth it to him as a ride spokesperson to have the chance to share Josh's story with news media along the way. "Whatever I have to go through physically is nothing compared to what Josh had to go through," David said.
[Editor's Note 6/8: An earlier version of this article contained unsubstantiated allegations regarding Josh's medical care. Those statements have been removed.]