Are the medications a financial problem, or do you have good insurance?

We have pretty good insurance. My grandmother helps us out with some of the alternative things we've tried that the insurance obviously doesn't cover. So she helps out there. But the money isn't so much an issue for us as I know it is for a lot of people. We got insurance shortly before we were diagnosed. When we switched from California to Colorado we couldn't take the physical, because we wouldn't have passed and that would have boosted it up to another level. But we still have pretty decent insurance. It pays for so much. Of course, we've still had problems with it. My little brother Mo, he's very small. He's 13 and is only 4'8" and weighs 76 pounds -- we're very proud that he finally hit 76. He has grown so much in the past couple of years since they've been giving him growth hormones. He injects his hormone every night -- it's about the same size as an insulin shot. That costs about $30,000 a year. That was a fight with the insurance coverage: They weren't convinced that he really needed it. They thought it was just for cosmetic reasons, even though his body age is about two-and-a-half years less than his actual age. But they did eventually start covering it.

	Alora not long after she was born on Dec. 16, 1985. [Photo courtesy Gary Gale]

How do you keep track of your medications? Do you have trouble with adherence?

Well, you know, let's say I go spend the night with friends and I forget my meds -- there's one missed dose, possibly two. That's always an issue. We are pretty good about it, especially when dad sets them out. He has these little Dixie cups and the pills are piled in there. We just put them in our hands and take them. When we were younger we were very fond of stuffing them under the couch cushions. But, the realization came that the pills did actually work, and that they were really expensive, so we decided that it was a little bit more sensible to actually take them. But, it is hard just because, even though we only have to take them twice a day, it's still difficult to take them at the exact right times, all the time.

You talked about having to remember your meds when you go and stay at your friend's house. How do your friends react? Do they understand what the meds are for?

Yeah, they're amazing. I feel so blessed to have friends like them. They not only have been such an amazing support, but they also have asked to be educated, and have educated themselves so much. They completely understand a lot of it, some on more scientific terms than even I do. They understand what the meds are for, and what they do, and they're always asking questions, which is wonderful, I think.

Do you credit the medications for your good health?

Yeah, I do. I don't think I would have said that a few years ago, but I really do. They work miracles. Once you can put up with the side effects and find something that really works, they are wonderful.

Aside from taking your medication, what do you do to take care of your health?

Well, I used to do more than I do now, because my T-cell count was so low. I didn't eat shellfish for most of my life, or peanut butter, or anything with peanuts in it. My parents were health-food nuts even before we were diagnosed, so I was pretty old before I had my first Snickers bar -- I was probably in second or third grade, which, you know, a lot of kids think, "Oh, wow, you poor, deprived child!" But that's just how I was raised. I eat pretty healthy -- I try to anyways. I try to make sure I don't get too much sugar, make sure the vegetables are washed, and no raw egg -- I don't eat raw fish, sushi, things like that.

What is it about things like shellfish and peanuts?

My parents were worried about food poisoning. What might have been a mild case for a normal person could have potentially killed me when I had no T-cells. I'm not too sure about the peanuts. I believe there's an oil or a bacteria in peanuts that some people are allergic to. My T-cells are now in the 900s, and my viral load is undetectable and it has been for about a year and a half. So they aren't so worried about it anymore.

If you had the opportunity to speak with a young person who just found out they were positive, what would you say?

Hang in there. It's a long road but you'll make it, hopefully. It's hard to say. It really does depend on the person, but definitely hang in there. Look for the silver lining to the dark cloud -- it will hopefully show up sooner or later.

	ALORA'S POST-DIAGNOSIS MEDICAL HISTORY
	CD4+ Count (Jan. 2002): 750
	Viral Load (Jan. 2002): undetectable
	Medications, Side Effects and Illnesses (chronologically)
	Jan. 1988: diagnosed with non-PCP pneumonia
	Feb. 1990: diagnosed with non-PCP pneumonia
	Feb. 1992: diagnosed with mycobacterium avium complex infection in cervical lymph nodes
	Sept. 1992: started Bactrim (antibiotic)
	Dec. 1994: diagnosed with non-PCP pneumonia
	Jan. 1996: started Biaxin (antibiotic), AZT, 3TC
	1997: tried psychic healing*
	May 1997: stopped Bactrim, AZT, 3TC
	Jan. 1999: restarted Bactrim, started ddI, d4T, Sustiva
	Jan. 1999: Sustiva causes balance, dream problems; eventually subsides
	April 1999: d4T's interaction with ddI causes neuropathy, pancreatitis
	May 1999: stopped ddI, started Abacavir
	Oct. 1999: stopped d4T, started Viracept
	Dec. 1999: stopped Biaxin, Bactrim
	March 2000: started occasionally taking Albuterol, Flovent (for asthma)
	Aug. 2001: started taking Allegra (for allergies)
	More on Alternative Meds/Supplements
	Supplements taken: acidophilus, astragalus (immune-enhancing herb), beta carotene, CoQ10, echinacea, egg lipids, flax oil, garlic, ganoderma (immune enhancer, stress reducer, tonic and sedative), multivitamins, NAC, vitamin C, vitamin E, rutin (flavinoid), St John's Wort.
	* During 1997, Alora tried psychic healing; no physical contact was involved in the therapy. Her father says the aim was to "clear HIV from the body and improve immune functions." During this time, Alora was still taking Biaxin and (for a little while) Bactrim.

Alora Gale can be reached via e-mail at alora@npan.org.