A Day in the Life of Ron Parron--AIDS Patient

Ron Parron is a 29-year-old PWA (Person With AIDS). He takes 100 pills a day: 25 of prescription drugs, including AZT, and 75 of homeopathic medicines, among them vitamins, herbs and minerals.

Parron was diagnosed as a PWA on Sept. 20, 1985, what he calls “Black Friday.” He appears in relatively good health and says he has gained about 15 pounds in the past two months. Last week, a check of his T-4 helper cells read out at 426, up 27 from two weeks ago. (A normal range of T-4 cells, those that the AIDS virus attacks in the body, is 447 to 1,284.)

“My doctor is horrified at all the things I’m taking, but he knows about it,” said Parron, who lives in Long Beach. “And he can’t deny that my counts are going up.”

Like other PWAs on AZT, Parron must have a complete blood count done every two weeks. AZT, which costs about $10,000 a year, must be taken six times a day at four-hour intervals.

‘Restraining’ the Virus

“You can’t miss taking it (AZT) by 10 or 15 minutes either way,” Parron explained. “What it is doing is holding the virus back, restraining it in your body and you don’t dare give it that window so the virus can get in and infect a whole bunch of other cells.”

Parron and several of his PWA friends in Long Beach who are on AZT use small pillboxes with timers that can be set at the proper intervals to remind them it’s time for their capsule. “They’re called LCD countdown timers and they’re $14.95 at Radio Shack. The guy there told me he can’t keep them in stock, but he doesn’t really understand why.

“I’ve been on AZT six weeks, but I almost died the first week I took it,” he said. “I had a 104 degree fever, migraine headaches, nausea. It was terrible. Fifty percent of the people who take it have a real severe reaction to it.”

Along with the AZT, Parron also takes acyclovir, which he believes is helping him avoid the severe anemia that often affects AZT patients.

Homeopathic Approach

Opening a spice cabinet in his kitchen, Parron showed a visitor shelves filled with homeopathic medicines. Among the 40 different kinds of herbs, vitamins and minerals he takes are garlic capsules; beta carotene; licorice root; a special blend of Vitamin C; Lysine; Pau d’Arco, a capsule made from Brazilian tree bark; a form of AL 721, an egg lecithin; and shiitake mushroom extract capsules, thought to have antiviral properties.

“One capsule of the shiitake mushrooms is equal to eating 480 grams of raw shiitake mushrooms,” he said. “It’s $10 a bottle and lasts 15 days. I’d say I spend about $200 a month on all the vitamins and minerals I take.”

Since being diagnosed with AIDS, Parron also has had to take an anti-depressant, tranquilizers and sleeping pills because his doctor says he has “depressive anxiety.”

Parron said that his prescription drugs, which he keeps in bottles on the kitchen windowsill, cost $900 a week.

“Last year, I was so depressed I was going to commit suicide--I had all the pills and even wrote the letter--but at the last minute, I called someone,” said Parron, who came to California in 1983 from Orlando, Fla. He now works with Long Beach’s Project Ahead in crisis interaction with PWAs who are threatening suicide.

Insurance Running Out

Parron, formerly a national account executive with Raygal Design Assn. in Irvine, is worried what will happen to him in October when his medical insurance runs out. To date, his insurer, United Insurance Co. of America, has paid out $86,000 for his medical bills.

“When it’s gone, I will have to go on MediCal,” Parron said. “And they won’t pay for 50% of the drugs I have to take. I don’t know what I will do then.”

Parron said that a month after he was diagnosed with AIDS, he ended up in the hospital with pneumocystis (a form of pneumonia that attacks AIDS patients) and was in and out of the hospital for nine months.

A specialist in kitchen equipment and restaurant design, he has not been able to work since. He lost his home at the beach and his car was repossessed. He now lives on Social Security, and gets weekly food rations from the food bank at Christ Chapel, a gay church in Long Beach that he attends.

“My company took a real pioneering attitude when I was diagnosed,” Parron said. “They put me on medical leave for a year and let me stay on the insurance at their discounted rate--they paid the premium and I paid them back monthly. We did have a fight with the insurance company, though. They were trying to say that I had a pre-existing condition. But they all do that to PWAs.

“Then, after that year of coverage with the company, according to law in California, you can get an extension of benefits and the insurance carrier has to pick up your coverage.”

Parron said that there were a few individual employees at his firm who were upset when they learned he had AIDS, “but the company was very good about that also, and tried to inform people. There still were those who wouldn’t let me use their telephone.”

Nationwide Network

From his small apartment over a furniture store, Parron also runs one of a nationwide network of guerrilla clinics, estimated at about 90, that serve 5,000 PWAs.

He assists 30 to 40 other PWAs each week, supplying them with free vials of DNCB, dinitro-chlorobenzene, a photochemical that is added to Vaseline Intensive Care lotion. It is made with a special formula devised by the people who operate the guerrilla clinics. The patient applies a small amount of the mixture to his biceps with a Q-tip. It registers an allergic reaction and is believed to stimulate the immune system.

“The guerrilla clinics started as a source for DNCB,” said Parron, “but when using that sort of died down, we became much more of an information and dissemination network, giving people the latest information on alternative treatments and what are the newest drugs.

“It’s hard to be a judge of what to filter out, but after a while you can tell the good from the bad, the really off-the-wall stuff. I tell people who call what I think works. It’s like the cure of the month. That’s awful to say, but that’s really what it’s been.”

Parron keeps AIDS research documented in his computer, and also has bought a Physicians Desk Reference to consult for descriptions of drugs.

A Buying Club

Recently, he also started his own PWA buying club, getting vitamins, minerals and herbs from Jarrow Formulas, a wholesale vitamin company in Los Angeles, and selling them at his cost.

Some people give Parron donations for his work, he said, and he accepts those.

“People say I’m crazy to sell these at cost, not to make a profit,” he said. “But I don’t believe in making money off other people’s misery. It makes me feel good to help people, and good comes back to me in return. If I can help one person, then I feel a glow. Ninety percent of this battle is all fought mentally with this disease.”

Recently, Parron got in a case of lauricidin, one of the latest alternative remedies used by PWAs. “It’s 300 mg. of lauric acid, a fatty acid encapsulated,” he said. “It’s supposed to be similar to AL 721. I kept one bottle for myself and a guy came in and bought the rest for himself and his friends. I charged $9 a bottle; that’s what I bought it for. He gave me a $5 donation for my help. He said he was sorry that’s all he had to give. It almost made me cry.”

Other PWAs have given Parron larger donations for less assistance. “A lawyer called me and wanted some DNCB, so I sent it,” said Parron. “It cost me about 10 cents to make and $1 in postage. I got the nicest letter back from the guy thanking me, and his contribution, five $100 bills. Isn’t that something?”

Parron said that he has heard of other people who sell alternative medicines to PWAs at quite a handsome profit. “One guy I know, he has AIDS himself, but he sells the shiitake mushrooms for between $40 and $60 a bottle when he paid $10 for it. That’s unconscionable to me. I probably get more money in donations than if I marked it up.”

Parron smiled and continued: “I don’t believe in some of this stuff, some of the hocus-pocus, the healing crystals, the flower essences. But I do believe there is a healthy balance you can reach. I would not abandon my AZT and go totally for homeopathic things. I think you can balance them out.”