Thanksgiving to World AIDS Day

Thank you. Thank you for acknowledging the power of a virus to ravage lives. Thank you for extending compassion to every human being, protec...

Wednesday, November 28, 2012

World AIDS Day - Bad Timing?

Many express concern that this December 1st date, falling soon after the Thanksgiving kick-off of a holly, jolly season, is an especially bad time to focus attention on a fatal pandemic. Perhaps there’s never a good time to think about AIDS.

On the DC weekend I stumbled across my first World AIDS Day observation, AIDS was the last topic I wanted to think about but the only one on my mind since my brother Bret and I had spent much of the 6 hour cross-country flight in and around the topic of how his days would end now that his fight with HIV was rapidly coming to an end. Yet even that dark World AIDS Day contained a spark of hope, flickering in the last-minute (late for our plane) urgency with which Bret filled a box with HIV/AIDS informational pamphlets to share and in the candlelight vigil we happened upon along the White House lawn.

“In 2011 there were 1.7 million AIDS-related deaths, lower than the 2.3 million in 2005.”   - Fast Facts about HIV

In the 18 years since, that spark of hope has ignited into a beacon of optimism for the 34million people infected with HIV. Even as scientists strive to contain a constantly evolving virus, prevention messages and treatment delivery methods are now customized to address varying cultural and social needs. New focus on HIV stigma now shines a light on human rights violations, like ending violence against women, that challenge individuals and countries alike to consider the worth and inherent dignity of every human being.

It’s never a good time to dwell on the grim reality of an incurable virus that’s the fourth leading cause of death worldwide but isn’t it always a good time to rejoice in the growing light of hope that can only be made possible by the tireless care, advocacy, and interest of each one of us? Please join me in living the 2012 World AIDS Day theme, "Working Together for an AIDS-Free Generation", today and everyday until that light is visible in every corner of the globe and AIDS is history.

Tuesday, September 11, 2012

All for One

2 passes down, 1 to go.

Wait a minute, what’s that extra little pass thrown into the morning?!  Beaver Pass - a little 2250’ bump in the road before the “real” climb over Steven's Pass. That’s precisely why this ride day is dedicated to the determination of those who pushed past every obstacle and setback through the 3rd decade in AIDS history.

Whether fighting for policy change or funding, widespread access to the latest treatments and prevention methods or trying something new when the latest idea failed to yield adequate results, it took determination to slow the number of new HIV infections and AIDS deaths in many countries. It will take an equal share of resolve to maintain and advance that trend beyond the obstacles of this decade to the next level of making AIDS history.

Here’s to all those determined to end AIDS, those who depend on them and those who cheer them on.

Monday, September 10, 2012

Red Badge of Courage

The summer of 2001 I was still a novice cyclist, preparing for my longest ride to date. Since we would cross the Continental Divide on Day 2 of the 7 day ride across Montana for HIV/AIDS vaccine research, a friend and volunteer coach (who more than earned the moniker “The General”) insisted we train by riding over Blewett Pass. It took a lot of red vines to coax me over that mountain pass under the hot, hot sun so you can bet they’ll be in my jersey pocket tomorrow whether it’s 90 degrees or a traditional Day 2 kinda day. 

Tomorrow's Day 2 ride is dedicated to the acts of courage pervasive in the second decade of AIDS in the world. Ryan White, the young hemophiliac banned from public school when diagnosed, lost his fight with AIDS in 1990. The young man had put such a human face on AIDS stigma in a time when services were so desperately needed that Congress soon after passed the Ryan White Care Act. Although it has struggled to survive numerous budget cuts, the Ryan White Care Act continues to this day to make help available to persons affected by HIV.

Princess Diana held an AIDS baby and the world watched. Then she dedicated her very public life to AIDS advocacy.

At the 1992 Republican National Convention, Mary Fisher, an HIV-positive woman, admonished her party for their negligence in the face of the growing HIV and AIDS epidemic:

“We have killed each other with our ignorance, our prejudice, and our silence. We may take refuge in our stereotypes, but we cannot hide there long, because HIV asks only one thing of those it attacks. Are you human? ” -Mary Fisher
The FDA approved several new drugs found to be helpful when combined into individually customized “drug cocktails” for those with AIDS but they offered little help to those infected with HIV but not yet showing symptoms of AIDS. I have personal experience with the heroes of this scenario. Most had cheated death once upon receiving their AIDS diagnosis so were grateful for the extra months – maybe a few years – and the quality of life improvement offered by combination drug therapy but they knew a cure was out of their reach. They offered their bodies for every possible human trial, carried pamphlets to friends and public places to advocate for safe sex and HIV testing, told their story and fought to their dying day that others could avoid their fate. My brother, Bret, was one of these heroes, as were several others whose example we seek to carry on – Peter Harding, Donald David Fehrenbach, Phil Zwickler – but theirs are only a few of the very many acts of courage in this period of AIDS history.

With gratitude to the Avert AIDS Timeline for reminding us of the many heroes fighting through the peaks and valleys to make AIDS history.

Sunday, September 9, 2012

In Search of the Summit

3,022 feet to the summit, over 38 miles of climbing. Construction on the downhill means the reward will be briefly enjoyed, but that’s not unlike the first decade of AIDS in the world.

Tomorrow’s ride over Snoqualmie Pass is dedicated to the pioneers of that first decade. Doctors, nurses, druggist and scientists who keenly observed, reported and tracked mysterious trends. The fatally ill who faced no hope and a sure, lingering death. Loved ones who became unlikely activists, quickly organized to disseminate any and all new information in a valiant attempt to save others; AIDS charities and service organizations formed. Even as the death toll rose to staggering levels, they were not deterred; their loved ones would not die in vain.  

"In many parts of the world there is anxiety, bafflement, a sense that something has to be done - although no one knows what." -The New York Times

The unknown bred fear. Fear breeds prejudice and AIDS would carry its stigma from homosexuals to drug addicts to foreigners to a 13 year old hemophiliac, banned from his public classroom for fear his AIDS would spread to his classmates.

It was also a time too easy to be in denial that one’s life could be impacted by AIDS... "Let’s see, never shared needles, not a homosexual or had a blood transfusion and since I never plan to do these things, I’m safe."

The WHO reported in their 1987 Weekly epidemiological record ‘'Global Statistics” that 150,000 cases of AIDS were expected to develop in the following 12 months and up to 3 million within the next 5 years from the estimated 5-10 million people infected with HIV worldwide.

On December 1, 1988, the first World AIDS Day ushered in a turning point. Thousands of demonstrators had shut down FDA headquarters earlier that year in a successful effort to convince the FDA to fast track the approval of several promising drugs and soon a human trial of the drug AZT would offer the hope needed to fight another day.

The Avert AIDS Timeline offers many insights into the pioneers and the mountains they tackled in this early period in AIDS history. Many of them never made it to the top, let alone enjoyed that downhill reward. In light of their tenacity in the face of unbelievable odds, I can manage a 40 miles climb.

Friday, September 7, 2012

The Only Way Down is Up

No hills. Only mountains.

Must have felt that way 30 years ago as doctors, nurses and the CDC faced a mysterious wasting disease viciously attacking young people that only seemed to grow worse as it became better known as AIDS.
Mountains can consume a landscape but are not insurmountable and the best part about rolling down the other side is the momentum used to make the next one seem less ominous.

Over 3 days next week, I’ll pedal my bike over 3 mountain passes – one for each decade of AIDS in the world – recall the struggles and triumphs of the past and visualize the hope we bring to the future.

Wednesday, August 29, 2012

Stealth Ride to Turn the Tide

Anniversaries present an annual opportunity to pause on the journey forward, look back and remember where we started, placing present conditions in the context of our past.
Breakthrough Riders on Day 4, 2002
This September 10th my kickstand goes up on another cycling challenge calling attention to the 30 year global journey to end AIDS. We call it the Stealth Ride because it’s less an event than a personal challenge in the form of a bicycle ride where participants foot the bill for all costs so 100% of your donation flows directly to the front lines of HIV research, boosting progress forward. If the concept sounds familiar, chances are good you were part of the Breakthrough Ride, my 1000-mile cycling odyssey powered by donated support from Seattle to San Francisco and generating $30,000 for the UCSF AIDS Research Institute exactly 10 years ago.

Stealth Ride Puget Sound Riders
Originally, the Stealth Ride was to follow the former AIDS Research Ride route from NYC to DC but plans changed for several folks and this type of non-event made it easy for our west coast contingent to pocket the airfare, take our challenge closer to home and throw in a little elevation. On the 10th anniversary of the Breakthrough Ride, I’ll set out from Snoqualmie Ridge with fellow Puget Sound Rider and long-time cycling partner, Jon Fehrenbach, to scale 3 mountain passes over 3 days - Snoqualmie Pass (3,022 ft), Blewett Pass (4,102 ft), and Stevens Pass (4,061 ft) -  finishing up in Skykomish, WA on Wednesday, September 12.

The past decade has produced numerous breakthroughs in the fight to end AIDS, to improve and extend the quality of life for those affected by HIV and AIDS. Dr. Yuntao Wu's George Mason University lab made an important discovery that opened the possibility for an immune system to slam the door on HIV and lock it out permanently. When HIV can’t compromise the immune system, it never progresses to AIDS. Money raised in the first 3 NYCDC AIDS Research Rides (2008-2010) helped Dr. Wu secure NIH grants to file for a provisional patent and rapidly advance their research.

Today, there is still no cure for AIDS, HIV infection rates continue to rise disproportionately in diverse segments of the population and AIDS stigma has proven a formidable barrier to prevention and treatment  efforts but let’s use this anniversary to look back, see how far we’ve come and recommit to see this journey over the finish line.

Stealth Ride fundraisers coast-to-coast have set a goal to raise at least $35,000 for this groundbreaking AIDS research but the sky’s the limit and every donation is 100% tax deductible through Day2Inc. Your anniversary contribution will be gratefully accepted and securely processed on my personal online page.  Thanks for your early and generous support!

Monday, July 23, 2012

Love is the Cure

"Because the AIDS disease is caused by a virus but the AIDS epidemic is not."
 Sir Elton John, flamboyant rock star of my youth and song writer extraordinaire, touched by an ostracized teenage hemophiliac, Ryan White, to become champion of all those affected by HIV/AIDS and founder of the Elton John AIDS Foundation still writes a compelling love song.

In his keynote address at a special session of the 19th International AIDS Conference, Sir Elton reminds us of the human responsibility each bears in this battle that can save millions, because "AIDS is fueled by stigma, by hate, by misinformation, by ignorance, by indifference," and "no matter who you are or who you love; no matter where you live or how you live; no matter what you have or haven't done, everyone deserves compassion, everyone deserves dignity, everyone, everyone, everyone deserves love."

Sir Elton's keynote address begins about 10 minutes into this webcast but the entire session is worthy of a listen.

Captain Fantastic indeed.

Monday, July 9, 2012

Faces of Love

Last weekend I found myself with several unplanned hours in San Francisco between a busy work week and an international flight so I slept in late, grabbed a latte and headed up California Street to ground myself with some desperately needed meditation time at the Grace Cathedral outdoor labyrinth. I entered its winding path with intentional focus on gratitude and praise for the joy found in this very moment of warm sunshine, the sweet smell of jasmine, clanging trolleys full of tourists winding through a city festooned with rainbow flags and storefronts, gratitude for a city that so embraces its diversity. Upon reaching the labyrinth center, I paused, and then asked for more. What more could I hear, see, say or do to heighten the level of joy in this world? Opening my heart and mind for the answer, I stepped back out on the winding return path outward and listened.

Listening in silence is not an easy task for my busy mind. I’d hoped the monotony of a labyrinth walk would help tune out all competing thought but a song broke the silence and played endlessly over in my mind. I tried to dismiss it along with my shopping list and the reminder to check in for my flight but the song kept coming back. 
“Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His Glory and Grace.”

Words and Music by Helen H. Lemmel, 1922
This was not a song I’d recently heard or even one I particularly love and it took several turns for me to consider that maybe I should pay attention; maybe this was the message I was asking to hear so I let its simple words flow through my mind as I twisted around the labyrinth and soon new images appeared – faces from the AIDS Vaccine 200.

 First I saw my teammates - two cyclists who’ve traveled this road with me each of the past 15 years. We aren’t getting any younger and it showed on this hard, early season ride but we won’t tolerate the thought of not doing something to stop others from enduring the pain we witnessed in each brother’s lost battle with AIDS.

Then came three loving faces of Atlanta family and friends who dropped busy schedules to offer on-site support by spending time and a meal with us. Their gestures of friendship and encouragement put a tangible face on our many donors who express compassionate commitment by contributing when we ask, with many also motivated to actions of their own choosing.
  Next I saw the face of Dr. Mark Mulligan, head of The Hope Clinic where Emory Vaccine Center conducts its clinical trials. I met Dr. Mark on the 2011 AV200 when he handed me water at the first rest stop, asked why I was riding and listened with genuine interest to my answer. I watched him repeat that gesture with nearly every participant on that weekend’s ride. Dr. Mark approached me on registration night this May with the biggest grin, bursting to tell me how he had trained and raised money to ride all 214 miles right along with us this year (and he did!).

Finally, there was Joe. Our team had reached that last lunch stop with a well-timed plan: bathroom, sunscreen, food, water, go! At our pace under a hot sun, we calculated 20 minutes to accomplish this lunch plan if we hoped to arrive at the finish line in time. I was anxious sitting on that folding chair cramming in food I needed but didn’t want when my eyes caught sight of an outrageous pair of polyester apricot pants and shocking orange vest above which shone a glittering jewel over the widest smile I’d seen all day. Placing an icy cold bottle of water in my hand, he simply said “what else can I get you right now?” I instantly relaxed. This was Joe’s first AIDS ride experience. He’d been hustling in full theme costume all day in that searing heat but was still smiling as he served the last group of riders through his stop.

Each face held my answer by their reminder of the most important reason I ride – to be the face of love and acceptance that says above all else that every life is worthy of joy.  The prevalence of HIV/AIDS stigma around the world remains a formidable barrier to prevention and treatment. The money we raise will eventually result in the scientific means for ending HIV/AIDS but the key to accessing it is the love we extend through compassionate concern for every infected person. I believe each of us is called to be the face of love and acceptance to all humanity, so for me the song that burst in my head is simple acknowledgement that the unconditional love expressed in each new face brought to that cause is exactly, and all we really need to access and extend life’s joy.

Thank you for helping the Puget Sound Riders smash our goal by raising $11,016 for HIV/AIDS  research at the Emory Vaccine Center but even more importantly, thanks for showing your face of compassionate love to each one affected by HIV/AIDS.

Click into more faces of the AIDS Vaccine 200
2012 AIDS Vaccine 200

Friday, April 27, 2012

Working Hard to End AIDS

“If you’re feeling good now, you’re not working hard enough”

Words uttered by my indoor cycling instructor midway through this morning’s torturous pre-dawn cycling drill. At 5:45am every Monday and Thursday, I don’t think. I follow instructions, and I work hard. As a result, I am stronger. It’s precisely the mantra required at this stage of the war on AIDS. We cannot afford to allow life-extending treatments, broadly available in the developed world, to leave us blinded to the devastation this pandemic continues to wreak on humanity worldwide.

Researchers at the Emory Vaccine Center have made extraordinary progress on preventive and therapeutic HIV vaccines. Every minute of every day, the scientists, doctors and researchers of the Emory Vaccine Center work hard to develop a viable HIV vaccine. The least I can do is sweat it out to cycle 200+ miles in return for your contribution – large or small – to support these vital efforts.  100% of the amount raised will be used to fund groundbreaking work such as:

•  Developing vaccines that prevent an HIV negative person from acquiring the disease, and at the same time help an HIV positive person fight the infection without anti-viral drugs.

•  The LifeForward clinical trial, at Emory Vaccine Center's Hope Clinic, is designed to test efficacy in a vaccine to prevent transmission of HIV.  The Hope Clinic is currently one of the top three enrolling centers nationally in the LifeForward clinical trial.

 •  Working to reinvigorate the body's immune system to fight chronic infections like HIV and reduce dependence on anti-viral drugs.

I feel good about our progress toward ending AIDS but I know that by digging deep to work harder we’ll gain the strength necessary to carry that progress over the final mile. Are you ready to dig deep and donate a few bucks to support this hard work by sponsoring the 200 miles I'll ride next month on the AIDS Vaccine 200?

Sunday, April 8, 2012

Riding for the Same Reason

It was a pivotal AIDS Ride season. Thousands of cyclists drawn to multi-day cycling events throughout the US, into Canada and across Europe raised millions of dollars for local AIDS service organizations and vaccine research in 2001. My Puget Sound Riders fielded its largest event team that summer with more than 30 cyclists and crew on the Montana AIDS Vaccine Ride while several more PSR traveled to Montreal for the Canada-US AIDS Vaccine Ride.

Yet for all its momentum, the AIDSRide infrastructure was crumbling. Ramped up marketing had broadened awareness and increased fundraising for several AIDS service organizations and 3 large HIV vaccine research institutes but event costs skyrocketed; soon more money was funneled to promotion than to the worthy beneficiaries. Mega-ride events came to an abrupt end. Beneficiaries lost a major funding source. Riders also felt the loss and immediately began connecting with each other to find ways to continue their commitment to end AIDS by riding a bike. The following summer several grassroots, all-volunteer ride events sprung up across the country - in New York, Atlanta, Texas, Minnesota and the west coast. That same year, my Ride for a Reason partner and I plotted a course and recruited dozens of volunteers across 3 states to raise $30,000 for the UCSF AIDS Research Institute by cycling the Breakthrough Ride cost-free from Seattle to San Francisco.

It’s hard work to organize enough volunteers and sponsors to run a no- to low-cost event in your spare time. We couldn’t manage a Ride for a Reason repeat so in the years since, our Puget Sound Riders team has sought out and participated in events begun by fellow cyclists in 2001 or 2002 who are equally committed to raising as much money as possible to end AIDS - the Empire State AIDS Ride, NYCDC AIDS Research Ride, AIDS Vaccine 200 and AIDS LifeCycle.

Last summer I rode in the 10th anniversary of the AIDS LifeCycle. This summer I’ll return to honor the 10th anniversary of the AIDS Vaccine 200, supporting HIV vaccine research at the Emory University Vaccine Center, with my Puget Sound Rider co-captains, Mary and Jon. In September I’ll celebrate the 10th anniversary of my and Mary’s thousand mile pedal down the west coast with a grassroots return to the NYC-DC route in a “Stealth Ride”, once again supporting Dr. Yuntao Wu’s research to end AIDS.

The cause of ending HIV/AIDS may no longer have the backing of high profile promoters but the ongoing efforts of many, backed by so many more, will bring the end of AIDS within our grasp and keeps hope alive for the journey.
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead