Health Insurance — Can't Live With it; Can't Live Without it

The president's plan for health care reform is a good thing — especially for cancer survivors like myself.

If I had been diagnosed with cancer during the months that I had no health insurance, there is a good chance I would be dead right now. My life was swell. My life was exceeding all expectations actually. I had my dream job, the host of an eco-friendly travel show, called Earthtripping. Whether kayaking New York’s Hudson River, climbing the ancient pyramids in Mexico City, or getting a doctor-prescribed dinner in Singapore, I got to see the world and bring innovative ideas to other intrepid travelers. One of the many benefits of having a job like this is the health insurance that comes along with it. I was able to qualify for the individual health plan coverage through The American Federation of Television and Radio Artists (AFTRA) because I earned at least $10,000 in four consecutive calendar quarters or less. AFTRA Health has provided health and retirement benefits to performers for over 50 years. I never got sick, but having the security of comprehensive insurance was a blessing. When the show was not picked up for another season, I ended up losing my AFTRA coverage when the new year rolled around. Since I was a happy, healthy, 35-year-old man with a cool girlfriend living it up in New York City, I didn’t even enroll in COBRA (COBRA is a law that lets you keep your employer-sponsored insurance for 18 months after you've left your job or become ineligible for benefits).

When I decided to focus my time on volunteering with my charity, Grassroot Soccer, I was on top of my game. Having just embarked on 550-mile soccer ball dribble from Boston to Washington D.C. to raise awareness for HIV/AIDS in Africa, I was enrolled in our health plan, The Blue Cross Blue Shield of Vermont. Other than being alive, this is one of the best things that has ever happened to me, because on Apr. 30, 2009 I was diagnosed with a rare form of cancer. Suddenly, health care and health insurance was ALL I could think about. The fear of losing your body to malfunctioning cells coupled with the astronomical costs associated with surviving was, and still is, too much to handle.

Reality check: For Americans between the ages of 15-39, cancer survival rates and quality of life due to cancer diagnosis have not improved in 30 years, especially when compared with other age groups such as pediatrics and older adults.

What is the number one reason for this? Late detection.

The overwhelming majority of adolescents and young adults in this country are too often diagnosed with cancer at late stages, which nearly always correlates with 5-year survival rates. The primary reason for delayed diagnosis? Being under- or uninsured, or, in other words, a gross lack of access to quality medical care. Study after study has shown that those who lack insurance or who are under-insured have higher cancer mortality rates than those who have insurance and therefore better access to care.

"The orphaned and oft-discounted young adult population in this country had the most to lose than any other age group had the healthcare reform bill not passed. Cancer is the number one disease killer for young adults. Discrimination against the more than 1.3M young adult cancer survivors living in the US has leveled the playing field and given the next generation a public health equity that we have deserved for years.", says Matthew Zachary, a 14-year young adult cancer survivor and Founder/CEO of the I'm Too Young For This! Cancer Foundation, the nation's leading grassroots advocate for young adults with cancer.

When it comes to a person's well-being there isn't much of a choice. Who chooses not to seek treatment for cancer? When the doctor tells you to do something or you will die, you do it. Who says, "well doc, that's a little more than I was had in mind, I think I’ll take a pass today, or maybe I’ll just take half"? I won't bore you with the details, but bi-monthly bills of $22,000 started arriving at my home. I still can’t look at these envelopes and shove them in my desk drawer where they still exist. One medicine is $7000 dollars a shot — I had 6 of them. My stem cell transplant alone cost over $250,000. Even with good insurance, I’m still paying loads of out-of pocket expenses. With the co-pays, prescriptions, parking fees, scans, physical therapy, blood work and special foods, this crap hits you right in the wallet.

It’s strange because I never ever contemplated health care and the system that governs it. I always had it, but never needed it. It was just a company that I wrote checks to every month. I’m not trying to be the voice of doom and gloom, nor do I want a pity party, I’m just using this time to bring attention to the reality of a situation that many people in the cancer community face every single day. I’m a guy who chooses to focus on the “good” in this world and feel in many ways the American health care system is absolutely incredible.  Doctors know how to remove a person’s diseased heart, replace it with the heart of a cadaver, and have the person live out the rest of her life. On the other hand, there have been some issues, especially in the discrimination against cancer survivors.

And now I’d like to deliver that good news. Last week, after many years of failed attempts, President Obama finally signed into law a reform bill that will balance the scales and give those affected by cancer a fair shake when it comes to health care reform. Yippee! At the end of the day, I'm proud to say this bill will have an enormous positive impact on the lives of cancer survivors.

In fact, LIVESTRONG (The Lance Armstrong Foundation) has created a list of the five elements of health care reform that the entire nation can be excited about. These are now the law of the land and it's important to know what's in this critical new law:

1. "Pre-existing" conditions are history. As soon as this year for kids, and for all individuals by 2014, no insurance plan can deny you because you're fighting cancer or any other illness.
2. You can't lose your insurance when you need it most. Within six months, no person can be dropped from their insurance plan when they receive a diagnosis of cancer or any other disease.
3. An end to "lifetime caps" on your benefits. You won't have to worry about your benefits "running out" as you're fighting to take care of yourself or a family member.
4. More coverage for young adults. Beginning in six months, you can stay on your parents' coverage up to the age of 26.
5. Support for clinical trials. By 2014, the law will prohibit new health plans from dropping or limiting coverage just because an individual is enrolled in a clinical trial.

Passage of this bill is historic, but just the beginning. Both the I'm Too Young For This! Cancer Foundation, LIVESTRONG and many others will continue their work on behalf of millions of cancer survivors as this law is implemented and push for policies that reduce the prevalence of cancer and support survivors. While the law is not perfect, it is decidedly a step in the right directions and — to quote LIVESTRONG CEO, Doug Ulman, himself a 3-time young adult cancer survivor: "This law will end discrimination by insurers against those with preexisting conditions and end arbitrary annual and lifetime caps on health insurance benefits. For the first time in our nation’s history, routine costs for clinical trials that can save lives and improve the quality of life for many others will now be covered by insurance. And for young adults faced with a cancer diagnosis, a demographic that has long been forgotten by our current health care system, they can now be covered under their parents’ insurance policy until their 26th birthday." In the end, this is one giant leap for all Americans whether they realize it or not — all in the hope of taking us one step closer to the day where we will live in a world without cancer.

Photos by Francine Devita and Jenna Morasca.