an open letter to president obama

Dear Mr. President:

I had something of an epiphany yesterday while marveling at the existence of undecided voters at this stage of the election. It occurred to me that these voters are likely the ones for whom one (deeply personal) issue will decide things. But I — and most other Americans — made up our minds long ago. Because you and Governor Romney represent two different visions of our nation’s past, present and future. You represent two value systems so distinct that, for most of us, it’s impossible to fathom how anyone could see this thing differently than we do.

In this election, there is one issue that is deeply personal to me: As a 29-year-old young adult with brain cancer, the Affordable Care Act, when it goes into full effect in 2014, will transform my life in ways I never imagined one piece of legislation could. On that day, the knowledge that I — someone with a chronic, pre-existing medical condition — can no longer be denied health insurance…or be kicked off my existing policy…or be told I’ve reached my lifetime cap will be an unimaginable burden lifted from my shoulders.

It will relieve the sometimes crushing anxiety that accompanies questions like What if I can’t work anymore? Or I lose my job? How would bankruptcy affect me? My family? What if I join the tens of thousands of Americans who die each year because their pre-existing conditions preclude them from obtaining health insurance and medical care?

But my decision was made long ago, and my vote this election would be the same regardless of this one, deeply personal issue. Because how could I not vote to make health insurance available to those who work three jobs to make ends meet but aren’t offered coverage by any of those employers? How could I not vote to ensure equal rights for all? To preserve women’s right to choose and equal pay for equal work? To care for our veterans, our seniors and the least fortunate among us? How could I not vote to fund quality education for young people and training programs for those who have lost their jobs and find themselves in search of new careers? How could I not vote for investment in clean energy and an approach to foreign relations that takes into account our global citizenship?

I’m not voting for a deeply personal issue. I’m voting for a deeply personal value system. I’m voting for the golden rule. Because we’re all in this together, and I’d want my fellow Americans to do the same for me.

Standing with you,
Naomi Sichler

art of the brain

this weekend, i attended a gala at UCLA for art of the brain — a nonprofit organization founded by judi kaufman who, like me, has received treatment for brain cancer from UCLA’s neuro-oncology department.  judi’s organization raises funds to help our neuro-oncology team as they pursue the therapies of tomorrow, treatments that could save — or at the very least prolong — my life and those of others with my disease.  the organization also coordinates a program called brain buddies, which pairs patients with volunteers who help mentor them through the difficult process of diagnosis, treatment and recovery.

it was an honor to be invited to the event, and it was even more meaningful to be given the opportunity to invite mike and chelsea, two of the people who have been with me through the most grueling — and most rewarding — moments of this journey.  the first part of the evening felt so very normal:  chelsea, mike and i enjoyed the balmy fall evening under chandeliers strung from trees on UCLA’s campus.  we sampled culinary offerings of smoked brisket, turkey chili and fried rice.  we enjoyed cocktails and gelato.  and we chatted casually with others at our table, and with other familiar faces — my nurse practitioner, nanette, among them.

then we joined a couple hundred other attendees in the hall for the evening’s program, which included a series of poignant moments that served as reminders that this was not just another normal fall evening.  we heard from an honoree whose nephew died just nine months after being diagnosed with brain cancer, but not before taking those nine months as an opportunity to mend fences with family and friends after years of struggling with substance abuse.  we heard a performance from a young hip-hop artist who is using his experience with brain cancer to fuel his musical artistry and drive.  we (those of us directly affected by brain cancer) stood to be recognized, and i sat back down to two sets of eyes brimming with tears.  and we heard from judi herself, who is struggling with the profound after-effects of radiation treatment she called “not worth it.”

this was not just another fundraiser for a cause that’s important to me.  my life hangs in the balance of this particular cause.  and while it is hard for me to type that sentence (i’m not given to melodrama), it is necessary — precisely because it’s not an exaggeration.  the work of dr. cloughesy and his research team over the next five years are of paramount importance to my future.

as i mentioned in my last post, they are currently working on targeted therapies that account for specific mutations in each patient’s cancer genome.  these therapies are currently working their way through the clinical trial process for those with more aggressive forms of the disease, and will eventually make their way down the chain to me.  this work, along with the individualized support brain buddies provide for patients in UCLA’s neuro-onc program, is critical and deeply personal to me.  and i know, given the intimate size of this organization and its close ties to UCLA, that funds raised by this organization go straight to some of the causes that most directly impact me and others with my illness.

my experience on saturday night stands in stark contrast to the flurry of pink we are seeing around us as part of breast cancer awareness month.  an organization called think before you pink draws attention to the massive PR campaign that breast cancer awareness has become — a campaign that raises billions of dollars but oftentimes does not funnel them toward causes with proven effectiveness.  (in fact, many corporations use the pink ribbon on products without donating ANY proceeds from that particular item toward research.)  i would encourage each of you to thoroughly research charitable causes before contributing.  and if you find yourself wanting to contribute directly to a cause that has helped me or/and will continue to help others like me, let me suggest:

art of the brain
UCLA simms mann center for integrative oncology
cancer support community – benjamin center