[Letter to Pat Fast from Tema Luft]

MAY, 1987. DR. BARTLETT HAS BEEN FAMILIAR WITH MY CONDITION SINCE MY
PARTICIPATION IN THE STUDY.
As MY T-CELL COUNT CONTINUED TO DROP THIS SUMMER, MY PRIMARY
PHYSICIAN SUGGESTED I CALL DR. BARTLETT AND ASK WHAT NEW TREATMENTS
MIGHT BE AVAILABLE IN THE NOT-TOO-DISTANT FUTURE. I WAS PRIMARILY
INTERESTED IN THE POSSIBILITY OF USING DDC. BOTH MY PHYSICIAN AND DR.
BARTLETT TOLD ME I WAS NOT A GOOD CANDIDATE FOR DDC. HOWEVER, DR.
BARTLETT TOLD ME I WAS AN EXCELLENT CANDIDATE FOR TRIALS OF THE GP160
VACCINE - A TRIAL WHICH HOPKINS EXPECTED TO START WITHIN MONTHS. IN
FACTS DR. BARTLETT TOLD ME I WAS "FIRST ON THE LIST" - I WAS THE FIRST
PATIENT HE WOULD CALL TO PARTICIPATE IN THE STUDY.
As I'M SURE YOU'RE AWARE, GP160 WAS INITIALLY DEVELOPED AS AN
AIDS VACCINE. BUT, A STUDY USING GP160 ON HIV-INFECTED PATIENTS AT
WALTER REED ARMY MEDICAL CENTER SHOWED THE VACCINE ARRESTED THE
DECLINE IN T-CELLS IN THE MAJORITY OF PATIENTS.
I WAS ECSTATIC. JUST AS MY T-CELLS STARTED TO DECLINE AGAIN, A
NEW DRUG WAS READY FOR TRIAL. AND, ACCORDING TO DR. BARTLETT, I WAS
FIRST IN LINE WHEN THEY GOT IT.
WELL, THEY'VE JUST ABOUT GOT IT. AND, I CAN'T GET IT. AND, THIS
TIME, IT'S BECAUSE I'M ALLEGEDLY NOT HEALTHY ENOUGH. ALTHOUGH I CAN
COMFORTABLY HOLD DOWN A PHYSICALLY-DEMANDING FULL-TIME JOB. AT C&P
TELEPHONE COMPANY, I'M NOT HEALTHY ENOUGH TO PARTICIPATE IN A VACCINE
STUDY - A VACCINE WHICH COULD SAVE MY LIFE. THE REASON: GENENTECH,
WITH INPUT FROM RESEARCHERS INCLUDING DR. BARTLETT, DECIDED TO LIMIT
THE STUDY TO PEOPLE WITH T-CELL COUNTS OVER 600. THEY HAVE ALSO
DECIDED THIS HAS TO BE A PLACEBO-CONTROLLED TRIAL.
I UNDERSTAND THEIR REASONING: GOVERNMENT GUIDELINES SAY PEOPLE
WITH T-CELL COUNTS OVER 600 SHOULDN'T BE GETTING TREATMENT. THEREFORE,
USING A PLACEBO ON THOSE PEOPLE ISN'T UNETHICAL. BUT, WHAT ABOUT
PEOPLE LIKE ME? WHERE DO WE TURN? AZT DOESN'T WORK ANY MORE. I'M
RUNNING OUT,OF TIME ON DDI. I'M NOT A CANDIDATE FOR DDC. WHAT EXACTLY
AM I SUPPOSED TO DO?
IT SEEMS TO ME THAT THERE IS AN EMINENTLY LOGICAL ANSWER: OPEN UP
A SECOND ARM OF THE STUDY FOR PEOPLE LIKE ME. No PLACEBO CONTROLS,
JUST GIVE US THE VACCINE AND SEE IF WE IMPROVE. IF WE'RE WILLING TO
TAKE THE GAMBLE - WHICH FOR US WOULD BE NO GAMBLE AT ALL SINCE THERE
ARE NO OTHER ALTERNATIVES - WE WOULD HOPE OUR GOVERNMENT WOULD
GUARANTEE OUR RIGHTS TO TRY IT. WE WOULD HOPE OUT GOVERNMENT WOULD
GUARANTEE OUR RIGHTS TO LIVE. IT'S ONLY SIX LITTLE INJECTIONS. IT'S
NOT A LOT TO ASK.
I DO NOT WANT TO DIE KNOWING THAT A DRUG THAT COULD SAVE ME IS
SITTING ON A SHELF A FEW MILES FROM MY HOME. I DON'T WANT TO BE
ANOTHER AIDS STATISTIC.
I WANT TO FIND OUT IF IT'S TRUE THAT LIFE BEGINS AT 40.
SINCERELY,

TEMA LUFT