Photo courtesy of Gary Gale
Morgan and Alora with their mother, Linda Brosio, in the spring of 1992. This picture was taken as they were conducting a welcoming ceremony for Alora's father Gary, who had just returned from the first National Alternative Medicine Conference in Washington, D.C. After his wife and children were diagnosed with HIV, Gary founded the National Pediatric AIDS Network, a resource for information on children and adolescents with HIV/AIDS.
Has paying for medications been a financial problem, or do you have good insurance?
We have had pretty good insurance. My grandmother has helped 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 was very small. At 13 he was only 4'8" and weighed 76 pounds -- we were very proud when he finally hit 76. He has grown so much in the past couple of years since they've been giving him growth hormones. He injected 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 was about two-and-a-half years less than his actual age. But they did eventually start covering it.
Unfortunately, I am nearing the point at which I will lose my father's coverage. I am trying to avoid the anxiety of finding other means of coverage.
When you were taking HIV medications, how did you keep track of what you needed to take? Did you have trouble with adherence?
Well, you know, let's say I went to spend the night with friends and I forget my meds -- there's one missed dose, possibly two. That's always an issue. My brother and I became pretty good about it, especially when dad sets them out. When we were younger, my brother and I were very fond of stuffing the HIV meds 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 was still hard just because, even though we only had to take them twice a day, it was still difficult to take them at the exact right times, all the time.
You talked about having to remember your meds when you stayed at your friend's house. How did your high school friends react? Did they understand what the meds are for?
Photo courtesy of Gary Gale
Alora not long after she was born on Dec. 16, 1985.
Yes, they were amazing. I feel so blessed to have had 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.
Aside from taking your medication, what have you done 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.
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 (zidovudine, Retrovir), 3TC (lamivudine, Epivir)|
|1997: tried psychic healing*|
|May 1997: stopped Bactrim, AZT, 3TC|
|Jan. 1999: restarted Bactrim, started ddI (didanosine, Videx), d4T (stavudine, Zerit), Sustiva (efavirenz, Stocrin)|
|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 (Ziagen)|
|Oct. 1999: stopped d4T, started Viracept (nelfinavir)|
|Dec. 1999: stopped Biaxin, Bactrim|
|March 2000: started occasionally taking Albuterol, Flovent (for asthma)|
|Aug. 2001: started taking Allegra (for allergies)|
|Aug. 2001 - current: Alora was on a structured treatment interruption for a few years and is soon to start medications again|
|More on Alternative Meds/Supplements|
|Supplements taken: acidophilus, astralagus (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 firstname.lastname@example.org.
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