Last week was a particularly tough week for our nation in a particularly tough year. There were so many terrorist incidents perpetuated by people within our own country that it is hard to believe we are the country that once stood out as the exemplar of what it meant to be free to be yourself, free to worship as you wish, free to be treated equally without respect to religion, race, political orientation, and most other categories (not perfect, but pretty good as it goes).
Normally I write my blog posts on the weekend but I didn’t have it in me on Saturday following the massacre at the Tree of Life Temple in Pittsburgh, PA. I have many friends in Pittsburgh and I was worried to hear if any of them had been injured. But more worrisome even than that was the daily news reportage of hate crime after hate crime. Saturday was the culmination of a week where numerous such incidents happened and where people were targeted for their religion, their race, their nationality. It has been very hard to find light in the darkness to write something pithy and entertaining when I have felt far from pithy and entertained. I just feel sick about the hatred that has been unleashed around us. I am not naive to think that hatred doesn’t exist, but for the most part it’s kept a lid on itself until the past two years. It is discouraging.
Despite that, I had promised a great friend and fellow Aspen Health Innovation Fellowship alumna, Liz Fowler, that my daughter and I would join her at an event in Los Angeles on Sunday. And, there I found that small light I was looking for, despite all of the other insanity around the country and the world. But those small moments make all the difference. Thank heavens for small moments.
The event was a 30th anniversary celebration for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). I flew to LA expecting the usual luncheon sit down, complete with speeches and rubber chicken. But what I found was something entirely different than that – it was a joyous, riotous celebration of success in a healthcare field where it is hard to see them sometimes. Due directly to the work of the EGPAF (and others too of course), pediatric HIV/AIDS has been nearly eradicated in the U.S. Further, when EGPAF started in 1988, there were 10,000 babies born with HIV around the globe EVERY SINGLE DAY. For those of you slow at math, that is 3,650,000 babies every year whose life was likely to end early and miserably.
But today, while nowhere near eradicated as a whole, the number of babies born with HIV is down to 400 per day globally, or about 150,000 per year. Yes, it’s still a lot of children, and that is heartbreaking. But what a difference it makes to focus effectively on a problem through targeted funding, research, public policy work and mission with purpose. It is truly something to cheer. Sometimes you have to congratulate yourself for what has worked, even if perfection has yet to be achieved. This was clearly one of those times.
And cheer was the operative word for the EGPAF 30th Anniversary event. They said come “casually dressed” and I didn’t believe it. So, there I was, overdressed because I figured “LA Casual” and they actually meant “No seriously, wear shorts”, at what amounted to a party for kids and adults and adults who act like kids. There was food galore, a picnic atmosphere, video games, hilarious photo taking opportunities, art projects for young and old, giant floating ball things to make you look like an idiot in a wading pool, music, hula hoops and a nice LA-style smattering of celebrities (Tia Carrere! Gilles Marini! Ed Westwick! Willow Bay! A host of Nickelodeon people including Fatima Ptacek who voiced Dora the Explorer! the kids from Modern Family!) In other words, something for everyone and nothing to make you sad.
It was anything but a rubber chicken fest. In fact, there were no table cloths or white napkins or forced conversations or large photos of suffering children. There was only silliness and joy and splashing paint and pizza and tons of kids running around. It was a celebratory atmosphere despite the difficulty of the work done by this organization and despite the shit show happening outside Smashbox Studios in the world around us.
It was so encouraging and uplifting to be at this EGPAF event, particularly knowing the back story. The Foundation was started by three moms, Elizabeth Glaser, Susan De Laurentis and Susie Zeegan, after Glaser’s 7-year-old daughter, Ariel, died of AIDS, which she contracted from her mother during childbirth. Glaser had contracted HIV from a blood transfusion during childbirth at a time before blood was pre-screened for AIDS. Glaser herself died of AIDS in 1994 but not before teaming up with her friends to focus on cures that would keep her younger son from dying too, despite his also being born with HIV.
Together these determined moms contributed meaningfully to changing the course of a global pandemic, and that is for real. They raised money from their famous and not-so-famous friends and got to work changing policy, investing in research for a cure and developing on-the-ground programs in the US, Africa and elsewhere with a goal that no child should die of AIDS. There is still much work to do, particularly in Africa. But in the US and most of Europe there are almost no babies born with HIV due in part to the work of EGPAF and what it made possible. And Glaser’s son, Jake, is now 34, living a healthy life despite HIV, and was the featured speaker at the event on Sunday.
For those of you old enough to remember, Jake’s dad was Starsky on the 1970’s TV show Starsky and Hutch. I think more people remember the badass car in that show than the show. But what has really lived on is Elizabeth’s contribution to humanity.
So given this difficult challenge of AIDS and particularly the horrible thought that kids can come into the world with it, it was so encouraging to think how much has been achieved and how even the darkness can turn into light. There is hope when there is intent. Do something nice for someone today or at least tomorrow. It matters. And for those of you in healthcare, remember that doing good for patients is the point. With intent and action, we can create hope.
I’ll leave you with this, a lovely song by Ray Charles, which makes the point so eloquently.
Light Out of Darkness (lyrics)
By Ray Charles, 1965
Love glows like a candle in the window
And when it glows
It brings light out of darkness
Giving you a rainbow
In the shadows
That may hide you
And in the night
It brings light out of darkness
And the light will guide you
Men without hope are lost
Who haven’t really learned how to dream
They don’t really see
You know those men are not me
I have loved and I have hoped and I have dreams
They are all I need to bring light out of darkness
Brighter than the sunbeams
Cyndi Grossman says
EGPAF is such an important organization. They have not only changed the face of the HIV epidemic and the course of so many children’s lives, they have been a significant supporter of research and programs to reduce the stigma associated with HIV, especially within families. A light in the darkness indeed!
Thank you. A much needed good news story. What a great testament to a mothers love, great women friends and supportive families. A real community to raise children.