from AIDS TREATMENT NEWS issue # , January , 8 Also published in SAN FRANCISCO SENTINEL, same date In Memoriam: Tom Jefferson

from AIDS TREATMENT NEWS issue # 48, January 15, 1988
Also published in SAN FRANCISCO SENTINEL, same date

In Memoriam: Tom Jefferson

(The following note was written by Martin Delaney, co-founder of Project
Inform and a long-time colleague and friend of Tom.)

Tom Jefferson, one of the founders of the alternative treatments movement,
passed away on Saturday, December 26.  Since 1983, Tom had devoted his life to
helping make HIV infection a manageable, chronic illness.  In the early years
of the epidemic, Tom served as the Special Projects Coordinator at the San
Diego AIDS Project.  After developing serious complications of HIV in 1984,
including lymphoma, Tom made a remarkable recovery treating himself with
unapproved drugs.  He became a pioneer in the use of combined anti-viral and
immune boosting therapy and shared his knowledge with countless others who
passed through San Diego seeking treatments across the Mexican border.
Through his role as a media spokesman, Tom became a symbol of hope for people
across the country.  The key players in nearly every AIDS organization and
healing group came to know and respect him.  Many believe that the guidance he
extended them helped save their lives.  In 1986, Tom joined Project Inform to
set up its hotline service and help the group grow from a small local
organization into a national resource serving thousands of callers each month.

After returning to San Diego in last October, Tom sought access to aerosol
pentamidine as a preventative against pneumocystis.  Researchers at the San
Diego ATEU, however, were skeptical of the San Francisco studies and offered
no help.  Later, Tom was refused access to the treatement by the San Diego
Veterans Administration Hospital - despite the fact that other VA hospitals
were already using it.  While he continued to struggle with VA burearcracy,
researchers at the ATEU put Tom on fansidar, reportedly without warning him of
the potential consequences described in a recent column in AIDS Treatment
News.  In less than a week, Tom came down with the dreaded fansidar side
effect called Stevens-Johnsons disease.  Over the next two weeks, this led to
treatment with massive doses of Prednisone, which shut the rash down, and his
entire immune system along with it.  A few days after beginning with the
Prednisone, Tom came down with pneumonia, in particular Legionairre's disease.
His physician believed that the organism wouldn't have affected him at all if
he had not been on the Prednisone.  He was placed on a respirator for about a
week.  When he came off life support, still in a very serious condition, Tom
was too tired to go on fighting the bureaucracy and the arrogance of competing
researchers, and instead chose to go home for Christmas with his loved ones.
He knew well the consequences of his decision, and yet reveled in that fact
that what would happen would be his own choice - not someone else's.
Completely at peace with his decision, and satisfied with what he had
accomplished in the last years of his life, Tom enjoyed Christmas at home and
passed away quietly with a smile on his face on Saturday, the 26th.

It is a great irony that after successfully managing his own illness, Tom
finally succumbed not to HIV, but to complications of treatment with a drug he
was forced to use against his will.  In his final days, it became very
important to Tom that people understand how he died, lest his death be seen as
a statement of hopelessness about treatment and the values he believed in.
Unfortunately, mainstream press reports have condescendingly reported his
death as evidence of the terrible and all-powerful grip of AIDS.  The real
story of his death is one of bureaucratic obstinance and competitive behavior
between researchers.

His death raises questions our community must face, perhaps as Tom's final
legacy.  First, why is this barbaric drug, fansidar, still being used in some
parts of the country?  Project Inform has now received 3 reports of death from
the drug in the last 3 months.  Fansidar's potential for deadly side effects
is well documented in healthy people. Yet, it is given to gay men with deeply
compromised health - despite the availability of better and safer treatments.
There is no justification for continued use of fansidar.  Will it take a
malpractice suit before the message is heard throughout the country?

A second issue raised is the quality of care in the VA system.  Tom's
experience is hardly unique, as he and others had already been contemplating
complaining to Congress about the poor quality of care being given to AIDS
patients by the VA.

Finally, Tom's experience can't help but make us wonder how many of our
brothers deaths, attributed to HIV, really occurred when a patient was caught
in a whirlpool of causes and effects set off by one false move, one
bureaucratic stall, one act of ego or medical arrogance?  How much does the
life expectancy of AIDS patients depend upon on where and from whom they are
getting their treatment?

In Tom's memory, let's stop the use of fansidar.  And let's begin to report on
the stories of others who may have died unnecessarily, whose deaths are being
swept under the rug of AIDS.

Tom asked that donations be made in his name to Project Inform, where a
special account has been set up in his name.  Its funds will be used to
promote the causes which mattered most dearly to this brave and giving man.

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 * Origin: RECOVERY San Francisco (415) 441-2539 (Opus 1:125/9)