I am sitting here and I can't help but cry as I read about Kenya Wheeler, someone I've grown to admire even though I've never met him. I have also never met Ruby although we've chatted now and again and exchanged emails.
I just know they need help. And right now, I wish I could do more for them than write this diary for their help. But this cannot stand.
Kenya has a rare form of Brain Cancer and even though he has insurance coverage since he's a graduate student at the University of California, Berkeley he will be running out of coverage.
You see, in the space of almost eight months, Kenya Wheeler will have almost exhausted his entire lifetime cap for treatment under his student health insurance plan. The cap: $400,000. That's close to half a million dollars in only eight months--and that's all he will ever receive. His standard of care is evaluated by a dollar figure, not by whether or not his treatment is completed or successful. As of this writing, he has $40,000 remaining in his account: enough to cover five more days in the hospital. That's an average of $8,000 per day.
Huffington Post
Now, his lovely significant other Ruby Reid is a warrior woman, she's been doing everything she can to help Kenya fight, from sharing his journey to organizing fundraisers of all kinds. Not only that, she is an amazing organizer, from doing outstanding work with Organizing for America, starting the famous
Ruby's List, working for Courage campaign and moving on to Democracy for America
as their Online Training Organizer, as you can guess, that doesn't pay a lot either. But she fights the good fight and if you read the very thoughtful piece at the Huffington post, they both are fighters, they both work hard. They don't just talk the talk, the live and breath the talk on about every level.
I know this first hand.
And many others do, so much so that he was asked to share some thoughts on the 2nd anniversary of the Affordable Care Act.
Here is the complete text of Kenya Wheeler's speech on the occasion of the second anniversary of the Affordable Care Act. These remarks were originally written to be presented onstage with House Minority Leader Nancy Pelosi on March 23, exactly one week before the date he will enter the University of California, San Francisco medical facility to begin yet another round of chemotherapy.
My name is Kenya Wheeler, and I am a Cancer Survivor. I am also a survivor of our broken medical system. In August 2011, I was working as a graduate student researcher at UC Berkeley when early one Saturday morning, I began having seizures and was rushed to the Emergency Room.
After spending a week shuttling between the Critical Care and Neurology units, the only thing that was somewhat certain was that I had a brain lesion, which was the likely cause of the seizures. I was put on medication and I did not have another seizure after that. A few weeks later, a scan revealed that my lesion was growing rapidly. A few weeks later in early September, I had a craniotomy to remove the lesion and provide samples for a biopsy.
In October 2011, pathology results confirmed that I had a malignant condition: Primary Central Nervous System (CNS) Lymphoma - a blood cancer in the brain.
Although CNS Lymphoma does have a high fatality rate, recent research and treatment advances have led to much improved treatment options and outcomes, particularly for younger patients. I have been blessed to have a team of excellent nurses and doctors at my local community hospital and a nationally recognized Medical Research Center working together on a treatment plan to ensure my victory over cancer. My aggressive cancer requires intensive treatment, including frequent hospitalization for chemotherapy treatment. Yet this level of care does not come without a cost.
When I was diagnosed, I was enrolled as a graduate student at UC Berkeley. My health insurance coverage was through the University's student plan, which has paid 100% of my medical costs after meeting my out-of-pocket maximum. Yet, in what may be a tradeoff to ensure that students across the University system get care at an affordable price, the university's plan has a lifetime maximum medical benefit of $400,000. For younger students this is not a problem, as thanks to the Affordable Care Act, if they are under 26, they are able to remain on their parents' plan.
Unfortunately, for older students over 26, including re-entry undergraduates and many graduate students, health care options are limited for those---like me---with serious medical conditions that require ongoing, expensive care.
With these caps in place, the cost of my next phase of treatment will take me over the maximum benefit under my current plan. I am now struggling to find replacement medical coverage that will allow me to afford this phase of treatment without going into massive medical care debt.
The requirement to remove lifetime medical benefit caps under the Affordable Care Act would help me, as well as millions of other Americans who suffer from chronic diseases, to obtain the treatment we need to stay alive and healthy. This will include millions who don't have coverage now, yet cannot predict which medical conditions or challenges await their future.
In my case, even under the Act, the University of California plan will still have medical benefit caps through 2013 and possibly beyond. Because UC's SHIP plan is self-funded, it is exempt from ACA requirements unless this is changed by an Act of Congress. (More here)
If I had to wait until 2013 for further chemotherapy, my fast-growing cancer would certainly overwhelm me.
I strongly support the Obama Administration's efforts to successfully argue that "Obamacare" benefits our nation. The Affordable Care Act will help to fix our broken system and provide legal assurances that preventative health coverage and long-term care for chronic diseases will be available for citizens like myself who are afflicted with health challenges and will help identify hidden issues for those who are otherwise in great health.
Repairing our health care system is not a conservative or a liberal issue, it is an issue for all who are concerned with ensuring the health and well being of our economy and all who live in this great country in the 21st Century.
-Kenya Wheeler 2012
Just as Pamela Mays McDonald says:
It is the ultimate irony that as a former Deputy Field Director for Organizing for America, Kenya worked to mobilize volunteers in all 58 counties to support Health Care Reform legislation. That effort resulted in every member of the California Democratic Congressional delegation voting in favor of the Affordable Care Act. To overturn existing law based on partisan politics would set a dangerous precedent. If successful, what other laws would conservatives want to overturn?
As the Supreme Court, on this third and final day, weighs the future of the Affordable Care Act (AKA "Obamacare"), the saga of Kenya's journey these past few months demonstrates the life-or-death significance of the Court's deliberations. If the Act is overturned, people like Kenya will be thrown back into limbo while their conditions worsen or their families incur enormous debt. Kenya is an asset to America's future; we need him to survive, to thrive and to stay alive.
Emphasis mine
I am asking you to donate to Kenya's care and I will match the first $100.
I urge others to do so as well.
Here is where you can donate and learn more about Kenya and his journey.
Ruby and Kenya have inspired me so much and so many others. Lets show them that we help our own, not just those here that we call Kossacks, but those that we call Democrats, those that have fought for others and have tried so hard to make sure that no one goes without health care coverage, as no one should.
Every life lost because of lack of care or inadequate care should be a National SHAME. Anyone who wants health care should have affordable access to it, even if it is only a few dollars a month, they should have the opportunity to pay for it and to receive it. And not just the bare minimum, but preventative care that includes things such as nutritional advice, wellness care and education about how we can all live healthier and longer lives. This alone would save us billions and many lives.
We should be ashamed for every unnecessary death due to lack of health coverage. Shame.