'Your Money Or Your Life': Cancer Patient Races Against Health Insurance Cap

A 38-year-old Berkeley native named Kenya Wheeler seems to have everything: a positive personality; youthful good looks; a promising career; a loving, smart partner and a diverse group of friends in the Bay Area .

Kenya is a computer nerd and a policy wonk. He can recite facts, policies and intricate details at a breakneck speed while maintaining his calm, earnest composure. He wears a slight smile on his unlined face, with brown eyes twinkling behind dark-rimmed glasses. For enjoyment, he takes to the sky by piloting small planes. Along with his keen intelligence, his low-key positivity has been an asset in his career and life.

A former Senior Planner in the city of Compton, California, with over a decade's experience as a Transportation Planner for Parsons Brinckerhoff and Bay Area Rapid Transit (BART, he decided to continue his education and broaden his horizons. As an adult graduate student in the City and Regional Planning Department, College of Environmental Design at the University of California, Berkeley, he has worked with Professor Paul Waddell's research team at the Institute of Urban and Regional Development to "develop transit indicators to enhance the UrbanSim model." That work sounds complicated, mysterious and futuristic to most of us. In both his personal and professional lives, Kenya has always been keenly focused on planning for our eventual tomorrows.

But plans for his own tomorrow changed when he was diagnosed with a rare, aggressive brain cancer last fall, at the beginning of the 2011 academic year. Suddenly he was thrust into the middle of a political debate that has been the source of intense ideological divisions and is now the reason for the current Supreme Court deliberations on whether to overturn a two-year-old, existing law. Once active as a political organizer, suddenly Kenya was actively organizing his life around the politics of the healthcare system--just to stay alive.

While undergoing brain surgery and multiple rounds of chemotherapy, he continues his research at Cal, despite sporadic low white blood cell count, relying when neessary on technology to remain active. When he can't go out, he keeps in touch via cell phone, Facebook and Twitter, while his partner Ruby Reid maintains a blog to document the week-by-week progress of his disease and treatment.

Last Sunday, a group of Kenya's political friends and fellow grad students sponsored a team at the annual Oakland Running Festival. Kenya and Ruby crossed the 5K race's finish line together at 47 minutes and 19 seconds. After the race, they entertained the "Run for Kenya" team at a nearby café, discussing politics and answering questions about his healthcare battle. He never mentioned pain, discomfort, fear or anxiety about his disease, only the excellence of the medical staff and his faith that somehow his next round of chemo would be paid for--by someone. He was determined to proceed with treatment whether or not he had adequate insurance funds or whether he would have to take on massive, additional debt. His attitude, as usual, was: full steam ahead.

"Run for Kenya" raised a few thousand dollars for his healthcare; team members were enthusiastic and the t-shirts are still selling. His devoted friends have established an online fundraising page to collect contributions. But unfortunately, that money is only a "drop in the bucket" of Kenya's need.

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.

For more information on Kenya's journey, click here.

On Friday morning, Kenya will check-in for his last scheduled round of chemotherapy. This intensive treatment will require an 18-25 day hospital stay. But his lifetime health insurance fund caps out on Day Five.

In a morbid way, the impact of the "lifetime" insurance cap provisions of the Affordable Care Act provide a new spin to the word "lifetime" when dealing with patients like Kenya, who without treatment, could very well find the end of treatment means the end of their lives. For the Supreme Court to keep this law alive would quite literally mean that many sick Americans could live, among them, Kenya Wheeler.

Kenya was recently asked to speak at a local Women's History Month rally, celebrating the 2nd anniversary of the Affordable Care Act with Congressional Leader Nancy Pelosi. Pelosi, a long-time San Franciscan, is a Bay Area politician with major responsibilities on the national stage. Kenya was unable to deliver his remarks. But his speech deserved a Bay Area audience; in fact, like Nancy Pelosi's, it deserved a major national stage. So it has been reprinted at the conclusion of this post.

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, 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.

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. 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

Kenya Wheeler enjoys the company of friends during a recent hospital stay. Each day in the hospital costs an average $8,000. (Photo /Ruby Reid)