The Search for the Cure Heats Up! Part One
"Happy" Anniversary, HIV. Now It's Time for You to Go!
By Bob Frascino, M.D.
January 29, 2011
Hey HIV. Yes, I'm talking to you HIV. You found me exactly 20 years ago today! Do you remember how when I was performing a procedure on Mr. X, a gentleman with advanced-stage AIDS, a myoclonic jerk of his leg caused a deep hollow-bore needle stick and nasty laceration in the palm of my hand? I certainly do. I also remember my first thought (expletives deleted), quickly cleaning the wound, and promptly popping an AZT (one of the only antiretrovirals available in 1991).
My baseline HIV-antibody and hepatitis tests were negative that day, but a few weeks later, when I developed a fever, rash, swollen lymph nodes and flu-like symptoms, I suspected I was now sleeping with the enemy. As you coursed through my veins, seeded the lymphatic tissue in my gut, and then progressed on to other targets -- lymph nodes, brain, resting memory cells, genital tract -- I hoped and even prayed it was just a cold and that I wouldn't be the 1 in 300 to win the HIV lottery jackpot and seroconvert as a consequence of an occupational needle stick.
A few short weeks later, a repeat HIV-antibody test confirmed what I already knew: I had not dodged the HIV bullet. Seeing "positive" on the lab slip was beyond surreal. Had I really so easily crossed the line from one who provides care to those with HIV/AIDS and become someone with HIV who would eventually need care? What was going to happen to my medical practice, my partner, my family? Being an HIV physician specialist, I was fairly certain what was going to happen to me. In 1991 the prognosis for the virally enhanced was grim. You, HIV, would plant me six feet under within a decade.
Ten years was the average survival statistic. Because there were no effective antiretroviral medications available at the time, for the first five years that we cohabited, I ignored you while you slowly, but persistently, began to dismantle my immune system, destroying one CD4
T-cell after another. By 1996 the damage you had wrought had become too obvious to ignore. You had not only decimated a good portion of my immune system, but you had also wiped out my energy. I was forced to retire from my clinical practice as medical director of the Immunology/Oncology Treatment and Research Center at a large medical subspecialty group. I refocused my remaining energy on teaching at Stanford University Medical Center and promoting HIV/AIDS awareness.
In February of 1996, when I retired from my clinical practice, we still did not have effective antiretroviral therapy (protease inhibitors didn't become widely available until the second half of 1996). Assuming it would soon be time for me to find my place in the universe, I divested much of the wealth I had accumulated and began working on my bucket list. One top-of-the-agenda item was to attempt to raise a million dollars for the battle against the virus that was killing me. Check! Mission accomplished. I began a not-for-profit tax-exempt charitable organization, The Robert James Frascino AIDS Foundation, whose mission is to provide crucial services for men, women and children living with HIV/AIDS worldwide and to raise awareness of the HIV/AIDS epidemic through advocacy and education. To date the foundation has raised over 1.5 million dollars for AIDS service organizations worldwide.
Next was a trip to the land down under with my life partner (and now legally married spouse) Steve (Dr. Steve, the expert in TheBody.com's Tratamientos forum) to frolic with koala bears, kangaroos, kookaburras and Aussie surfers. Check! Mission accomplished (and very much enjoyed).
Another item on the list was to promote various novel approaches to a potential cure for HIV, including immune-based therapies. Despite my training as a clinical immunologist, this item remained unchecked on my list. HIV was far more clever than any of us realized early on. In 1996 we didn't have the basic scientific knowledge or tools to effect a cure.
At the International AIDS Conference in Vancouver in July 1996, news of HAART (highly active antiretroviral therapy) was announced. Combining the newly developed protease inhibitors with other antiretroviral agents could reduce HIV replication to undetectable levels. I immediately jumped on the HAART-bandwagon. In retrospect we now realize that the Highly Active Antiretroviral Therapy in 1996 would have more accurately been named Fairly Active Antiretroviral Therapy, but that would have lead to a most unfortunate acronym: FAART. However, even FAART was a significant improvement over what we had for the first 15 years of the epidemic. In the years since, more potent, less toxic, more convenient antiretroviral agents have continued to be developed. FAART has indeed become HAART.
And so dear HIV, here we are, you and me, two decades and several hundred thousand pills (yes, that's an accurate pill count!) later, still coexisting, albeit far from peacefully. This year, just in time for our 20-year anniversary, the search for a cure for HIV has been dramatically invigorated. Consequently, HIV, I hopefully may finally be able to check that unchecked item on my bucket list. You remember, the one about novel immune-based therapies that would not only evict you from my T-cells, but would eradicate you from the planet. Yes, HIV, it may well be time for you to go!
Gentle readers, please stay tuned for part two in which I will explain why the search for a cure has been reawakened. Part three will be an update on our current cure strategies and clinical trials.
Want to get in touch with Dr. Bob? You can reach him through his "Ask the Experts" forum, by sending a message to the Robert James Frascino AIDS Foundation, or by leaving a comment for him below. (If it's a private message, or if it includes personal info such as your e-mail address or phone number, we won't post the comment, but we will send it along to him.)
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Comment by: alex
Fri., Jun. 17, 2011 at 9:08 am UTC
wow thats is an amazing yet tragic story. You will find a cure Doctor.
sexual health nurse practitioner (UK)
Comment by: aidsvictimssisterinlaw
Thu., Mar. 24, 2011 at 8:34 pm UTC
I get very angry to hear comments from ignorant, misinformed people that HIV/AIDS is a disease that is spread only by self-destructive or irresponsible behaviors such as promiscuity, unprotected sex, or IV drug use, or that people get it because they were "bad" or that they deserved it or should have known better. Your account of how you got infected is a perfect example of how someone does not necessarily have to be a "bad" person or do something "bad" to get HIV. You were just trying to do the right thing for your patient, you had an accident, and somehow, BAM! the damned virus found you and that was it. Neither you nor your patient was to blame for your infection; it was nothing more than bad timing.
I have read some of your literature and learned that you did initially have some unfortunate experiences with Zerit and other early drugs. Luckily, you are not only still alive but apparently have also been able to improve your quality of life by switching to better drugs and making use of Sculptra when necessary. And, hopefully you will live to die a very old man. Thank you for sharing your dual experience as an HIV specialist and patient and for being an inspiration to other people who are suffering from this scourge. Yes, I would love to see my unfortunate brother-in-law, whom I never met (he perished of AIDS in 1995, twelve years before my husband and I met), avenged by wiping this virus out of the universe forever!
Comment by: MALIKA
(FROM ALGERIA LIVING IN BEIN REPUBLIC)
Wed., Mar. 23, 2011 at 12:56 pm UTC
I WAS DIAGNOSTED HIV POSITIVE LAST YEAR MARCH IT HAS BEEN ONE YEAR SINCE I AM LIVING WITH THIS LITTLE CLEVER VIRUS SINCE THEN I HAVE SURFING DAY AND NIGHT ON THE NET TO KNOW ABOUT IT RESEARCH LEFT AND RIGHT BUT FRANCLY I HAVE REALIZE THAT THE CURE IS BLOCKED SOMEWHERE.IF THE CURE IS FOUND HOW COULD COMPANIES MANIFACTURING HAART MAKE MONEY?THEY ARE BLOOD SUCKERS THEY ARE MONEY MAKING PEOPLE.HIV POSITIVE PATIENTS MUST RIOT AGAINST GVMENTS NOT TO HAVE ACCESS TO HAART BUT FOR THEM TO WORK HARDER TO FIND THE CURE.THERE ARE PEOPLE WITH BRAINS MORE POWERFUL THAN THE VIRUS AND 20 IS NOT ENOUGH TO FIND THE CURE.I REJECT THE VIRUS HAART IS NOT A SOLUTION CURE IS THE AIM.SO SO PROMISES,VACCINES,DRUGS TO KEEP US ALIVE,HOPE,BATTLE WHEN WILL IT END?I WOULD LIKE TO HAVE ANSWERS. MAY GOD BE WITH US.
Comment by: Travis S.
(Olympia Wa )
Wed., Feb. 16, 2011 at 12:06 am UTC
I find you story a true inspiration breathing hope back into my life. With Dr like you helping paved the way so those of us have far better medications and treatments today. I see my doctor tomorrow found out about three weeks ago that I have AIDS cd4 cells and vireo load verified my fears. Thank you for sharing with us your story and giving me hope again.
Comment by: CJ
Fri., Feb. 11, 2011 at 8:37 pm UTC
I was recently diagnosed, thank u for your bravery! We all benefit from it!
Comment by: nedski
Thu., Feb. 10, 2011 at 10:13 pm UTC
Dr. Frascino, Thank you for your wonderful inspiring story of your long journey and struggle against a tiny but devastating Slayer. I have had similar events happen, ie: exposed to HIV at work, and for over 20yrs ,my journey continues. I'm here to promote strong mind work, initially when exposed ( self hypnosis, visualizing , attacking and destroying the structure of the virus mentally). I'm on meds now doing well. Go for it Doc.
Comment by: Jose Rizal
Thu., Feb. 10, 2011 at 9:35 pm UTC
Good day. My question is simple and probably you have answered many times. How far are we on curing HIV/AIDS? And I'm talking about TOTALLY Eradicating the virus in the system as to Ceftriaxone for Gonorrhea or Penicillin for Syphilis?
Comment by: Ted
Wed., Feb. 9, 2011 at 2:43 am UTC
I can hear the NBC News Special Report music now--you know, the dum, dum, da-da-dadum--with the news that a cure has been found. "And, we now go live to the White House where President Obama is about to remark on this life-changing news." I hold out hope that I will see that breaking news report. Although, it will probably be pre-empted with news about Lindsey..lol.
Comment by: michael
Wed., Feb. 9, 2011 at 1:23 am UTC
proleukin and interleukin treatments, doc? to stimulate reservoir cells?
Comment by: MMMark
Tue., Feb. 8, 2011 at 11:06 pm UTC
very inspiring words！
The sea water is PH little more than 7 so that the shell of finish consisting of calcium would not dissolve. The HIV children have problem with the calcium. Therefore ,I guess HIV can change the pH of body liquid thus affect man's curing of it. You smart scientist may check this out.
Comment by: WarningGP
Tue., Feb. 8, 2011 at 4:14 pm UTC
Lookin 4ward 2 hearing more.... Its time HIV got a wake-up call.....!
Comment by: Louise
Tue., Feb. 8, 2011 at 3:52 pm UTC
When is part 2 and 3 going to be up... Been checking everyday...
Comment by: Neli
Mon., Feb. 7, 2011 at 8:52 am UTC
Insipiring. i am struggling right now but will people like you i am hopeful. Thank you Dr Bob
Comment by: Nam
Mon., Feb. 7, 2011 at 8:36 am UTC
I just got diagnosed poz since Dec. 2010. I visit this page everyday to find article like this.
Comment by: Madison
Mon., Feb. 7, 2011 at 1:41 am UTC
So exciting! I feel the pulsing drums of a potential cure soon.
Comment by: jorge A leal
Sun., Feb. 6, 2011 at 10:08 pm UTC
Dr the place in the universe for you is here, being the model of inspiration to overcome the suffer and calamity and transform it in compasion and love for the others...No wonder the best karma in the world is yours and that is going to lead you with a long live.....THANKS FOR YOU WORK
Comment by: Amy
Sun., Feb. 6, 2011 at 8:37 am UTC
Yes HIV we will get you one way or another. Thumbs up to you Dr. Bob. I am recently diagosed, i have swollen lymph nodes, how are they treated??
Comment by: Helga
Sat., Feb. 5, 2011 at 10:33 am UTC
You're GREAT an inspiration and a shining light!
Comment by: Michael
Sat., Feb. 5, 2011 at 8:31 am UTC
I do not doubt a cure will be find some day,but the real question is how soon? I have read recently an article where Bill Gates talks about how fraustrated he is when it comes down to how long HIV studies/ research takes. He wants to cut that time. I couldn't agree with him more
Comment by: charlie
Sat., Feb. 5, 2011 at 2:06 am UTC
Just wanted to drop a short note of thanks. I've only read part one regarding the "Search for cure..." and tears started rolling down my cheeks. I'm only one of millions who live each day of a life changed by a virus, picking up the pieces, and turning each rock in search for hope. What a journey your life must have been. God has given you quite a mission. Thanks for bravely taking it on.
Comment by: Anonymous
Fri., Feb. 4, 2011 at 5:35 pm UTC
I admire your courage and conviction. Just when I thought I had it bad, I realize you have endured much more than I ever could imagine and yet you are still here fighting for yourself and the rest of us. I look forward to reading the rest of your articles especially the update on current cure strategies and clinical trials. I pray you are able to complete that last check mark. It will happen for you and the rest of us one of these days. Hopefully sooner than later. You are my hero!
Comment by: Anonymous
Fri., Feb. 4, 2011 at 4:26 pm UTC
Dear Dr. Bob,
After reading your text, one thought comes into my mind, almost instantly: with persons like you fighting this battle every day, finding a cure won't be a miracle, but true and simple justice. A lesson of humility. I feel like like Churchill once said: never did so many (hiv+/-) owe so much to so few.
thx for everthing Dr. Bob
Comment by: young student.
Fri., Feb. 4, 2011 at 2:44 pm UTC
I remember reading your story when i was in junior high school. To see your face is amazing and to hear that there might be a cure soon is gradifying. I feel like this disease has been around for far too long and its time to take it down. I lost my father to this disease. I am now going through a time of fear because i'm fearful that i might have contracted this disease aswell. I have not gotting tested yet because the fears are so overwhelming. I am in my early twenty's and have no children never been married and there is so much I have not seen in life yet. I cant begin to grasp the concept of what I would do if i have hiv.I am in a time of unbelievable fear. I hope that there will be a cure for this evil disease soon. I wish i could speak to you because your story is one of hope and triumph!
Comment by: Sunny
Fri., Feb. 4, 2011 at 2:37 pm UTC
Lets all work hard to find the ultimate cure for HIV, lets use the millions of dollars bieng spent upon ART medicines on finding the ultimate cure instead. We want to live without fear and anxiety of death every moment of our life.
How soon do you think will we be ready with the ultimate cure. Has some medicine been developed already ??
Comment by: Sakis
Fri., Feb. 4, 2011 at 12:48 pm UTC
Dr Bob, thank you for all your work and articles of hope. You are a true inspiration. Although i am not a doctor i know that we will all get rid of it !!! Soon, very soon... all together, YES WE CAN !
Comment by: Trish
Fri., Feb. 4, 2011 at 9:57 am UTC
Am also can't wait for part 2 and 3, May God protect you and give you good health. i lost my partner from this terrible virus and am also infected. Thank you DR Bob for giving us hope.
Comment by: louis
Fri., Feb. 4, 2011 at 6:40 am UTC
Very interesting, Dr Frascino,
it gives hope to the hopeless
tired of swallowing tons of pills daily
But one question. How soon for the cure?
one more year? two? three? ...
Comment by: Derek
(Bath, Somerset, UK.)
Fri., Feb. 4, 2011 at 4:43 am UTC
Bob, that's a great summary of your extraordinary story to date, and it's gripping reading.
So I'm much looking forward to your new installments.
Comment by: Douglas
(Miami Beach, FL)
Thu., Feb. 3, 2011 at 10:46 pm UTC
I can't wait for parts 2 and 3.
Comment by: Dave
Thu., Feb. 3, 2011 at 4:41 pm UTC
Thanks Dr. Bob! I have been playing host to our little virus, with it's selfishness since 1983 and am frankly more than ready to give it the boot. I realize that I am "lucky" to still be here, but not without many challenges. I guess the most challenging for me now, at 51, is trying to find someone to share the rest of my life with who can deal with the intruder who just won't go away. I hope and pray for you and all of us affected, for the eviction notice which can't come soon enough. If there is anything I can do, please let me know.
Comment by: Mark
Thu., Feb. 3, 2011 at 3:52 pm UTC
I hope it's as good as it sounds!
Comment by: Raphael
Thu., Feb. 3, 2011 at 3:32 pm UTC
Your FAART acronym had me rolling on the floor laughing... Thank you for that.
Also, thank you for the very nicely written account of your 20 years with HIV, and the nice reminder that the cure may very well be around the corner.
I seroconverted around 1997, and even after "FAART" was available I too was not happy with my prognosis. I was 23 then, and it happened during my very first intercourse in life, with a broken condom. Talk about being unlucky!
Today, life goes on, and I am very happy to attest that FAART has definitely become HAART.
Let's raise a toast for the future: a definite cure.
Thank you again,
Comment by: Charles
Thu., Feb. 3, 2011 at 2:27 pm UTC
I was diagnosed HIV+ in July of 2010 and at this point in time I have tested undetectable and my T-Cells have risen to over 400. I realized the other day that if I had contracted HIV long ago I would be in real trouble. I am lucky, if any HIV patient can use HIV and lucky in the same sentence. I tolerate the medication very well, one pill a night right before bed and have virtually no side effects. Lucky.....there's that word again.....I have also been lucky to have met many kind and caring people. Some living with HIV like me and others not. Recently I have met a great man and it seems that we are going to embark on a relationship..He is HIV+ too and doing very well like I am. Eager to read Parts Two and Three. Dr. Frascino thanks for all your efforts. Good things come from good people like you.....
Comment by: Tom
Thu., Feb. 3, 2011 at 2:10 pm UTC
Dr. Bob you are and continue to be an absolute inspiration to all of us with HIV. It is always a pleasure to read your informative comments, filled with good information; always expressed with empathy and compassion. We are so lucky to have people like you out there!
Best regards, Tom
Comment by: Not Gustav
Wed., Feb. 2, 2011 at 7:28 am UTC
Many thanks for your up-beat comments. As an Aussie living with the virus in the UK, I have (sadly) found life in England hugely depressing.
Americans have a much more confident CAN-DO approach to dealing with HIV - English patients (especially the gay men) just seem to whinge, whine and moan!!! So, thanks again for your uplifting and forward-looking remarks.
Comment by: Anonymous
(los Angeles, CA)
Tue., Feb. 1, 2011 at 8:41 pm UTC
Should cure be found, I sincerely hope you'll be the first one in line to get rid of the viruses. Thanks to your forum, I was able to stay sane and not let HIV fear run me over completely. You ought to be rewarded for your selfless service.
Comment by: Not Thomas
Tue., Feb. 1, 2011 at 6:18 pm UTC
Thank you Doctor Bob. I sincerely wish you many more twenty years, hopefully without the virus.
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Life, Love, Sex, HIV and Other Unscheduled Events
Bob Frascino, M.D., was President and Founder of The Robert James Frascino AIDS Foundation. He had been an outspoken, popular expert in TheBody.com's "Ask the Experts" forums on safe sex and fatigue/anemia since 2000. Once a Fellow of the American Academy of Allergy, Asthma, and Immunology, and the American Academy of Pediatrics, Dr. Frascino served as Associate Clinical Professor of Medicine, Division of Immunology, Rheumatology, and Allergy, at Stanford University Medical Center from 1983 until 2001. He was a member of the American Academy of HIV Medicine and had also been a distinguished member of the executive boards of numerous state and regional associations.
We're inexpressibly saddened to share the news that Dr. Frascino passed away unexpectedly on Saturday, Sept. 17, 2011. Click here to read more and to share your thoughts.
Subscribe to Dr. Bob's Blog:
October 19, 2011 - The Ultimate Unscheduled Event: A Blog Entry by Steven M. Natterstad, M.D.
September 23, 2011 - HIV Guidelines: Some Evolve; Some Don't. What's Up with That? Part Two -- A Blog Entry by Bob Frascino, M.D.
August 25, 2011 - HIV Guidelines: Some Evolve; Some Don't. What's Up With That? Part One: A Blog Entry by Bob Frascino, M.D.
July 27, 2011 - Three Decades of HIV/AIDS, Part Three: A Blog Entry by Bob Frascino, M.D.
June 30, 2011 - Three Decades of HIV/AIDS, Part Two: A Blog Entry by Bob Frascino, M.D.
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