Saturday, April 12, 2008

National Young Adult Cancer Awareness Week

Today wraps up National Young Adult Cancer Awareness Week. I know, it's terrible that I'm just posting about this. It's been a really rough week around here but I can't let this pass without acknowledging it and passing out some information about this often ignored group.

With regards to cancer, the young adult category generally applies to those between the ages of 18 and 39 years old. Despite the fact that, in the USA, there are 70,000 young adults diagnosed with cancer every year, our specific needs are often neglected or overlooked.

When I was diagnosed, I was a young mother in my early twenties pursuing a college education. Having to juggle all of those responsibilities that I already had and deal with the rigors of cancer treatment posed problems that wouldn't have existed if I was in another stage of my life.

Before cancer, I'd always planned to have at least one more child while VanGoghGirl was young so that she could grow up with a sibling. From very young and even now that years have past, she's never stopped expressing how much she wished she had a brother or sister like all of her cousins have. Even though I'm not in active treatment, my doctors all agree that it would be extremely unwise for me to attempt to have another baby. My spine might not be able to support the extra weight. Then there's also the possibility that, at any time, I may have to go back into active treatment. For me, that would mean surgery and being pregnant would certainly complicate what is already an extremely dangerous procedure. All of that is on top of the fact that I have lupus, which carries its own set of challenges that can be exacerbated by pregnancy.

Insurance companies often allow young adult students who are in college to still be covered as dependents under their parent's plan. That's a good thing because most of us couldn't afford to buy coverage on our own while living on a student budget. My university was great because our tuition included free access to the doctor's office located on campus so, even if you didn't have coverage, you could get all of your basic health care taken care of. We even had a pharmacy on campus where you could get your prescriptions filled at prices that were a bit lower than what you'd find at the big chain stores. However, many campuses don't have this sort of set up, so many college students have to rely on whatever coverage they could get through their parents.

Other problems arise when a college student has to quit school in order to continue treatments for their cancer. They may have to go out of town for radiation or surgeries. They may have nausea, diarrhea, or fatigue that makes it an impossibility for them to be in class on a regular basis. So what happens when a young adult college student has to drop out of school?

Well, typically, insurance coverage for dependents ends when the person makes 18 years old, unless they are a student. In those cases, coverage as a dependent will extend until they make 24 years old. That means, often times, young adults who have to drop out of school lose their health insurance coverage. In Louisiana, we have the megalithic Charity Hospital (now known as Medical Center of Louisiana) where indigent people can get care for free, but if you live in a state that doesn't have anything like this, you may wind up having your treatment delayed while you fight to get the Social Security system to recognize your disability status and provide you with Medicare coverage.

Having cancer is often compared with being in a race, a race for your life. From the time you are diagnosed, the clock starts ticking. The window of time for certain treatments can be very short. As your cancer grows, you may no longer be a good candidate for the sort of treatments that may be able to eliminate your disease altogether. The further along you are, the more dangerous and invasive and less effective the treatment options may be. So, any delay in treatment can make the difference between life and death. That's a very difficult thing for me to write because I know people who were/are affected by this very situation.

I was blessed in that the only oncologist in the state who could care for my kind of cancer was determined that there would be no delays in my treatment even if it meant he wouldn't get paid for treating me. My surgery was going to require a team of doctors, including a cardiologist (in case they had to stop my heart and cut off part of my aorta and replace it with a synthetic piece), an anesthesiologist (to keep me unconscious in case it became a marathon procedure), and a surgical oncologist (to actually de-bulk the tumor within the appropriate margins). It couldn't be performed at Tulane Hospital because the private hospital wasn't willing to eat the enormous cost of such a procedure like this, so the oncologist was doing the best he could to find doctors who could do the surgery and had surgical privileges over at Charity Hospital where the procedure would have to take place.

Fortunately, before it was time for the surgery, I got coverage and I was able to have my procedure done at the private hospital that had better facilities and equipment than the free hospital has. However, young adults with cancer should not have to wait for treatment because of the way that insurance companies and the government's Social Security program choose to operate. Let's face it, most of us aren't going to have benevolent doctors who'll be able to come to our rescue and save us from the life-threatening affects of delayed treatment.

Being the parent of a young child was difficult too. Earlier today, I wrote about how The German's family helped out when it was time for me to have my second surgery, but that doesn't describe our entire experience. How do you explain to a child that they'll have to quit the soccer team or stop their ballet lessons because you just don't have the energy to bring her back and forth every week? How do you get the teachers to understand why your child is missing so much school?

In Louisiana, we have mandatory reporting laws. If your child misses more than a certain number of days, then the school automatically contacts the city's Truancy Department and they meet with the family in order to decide whether or not to refer the case to the Louisiana Department of Social Services (i.e. the child protection agency that can take your kids and put them in state's custody if you are deemed neglectful or abusive).

The German and I met with an agent from the school system's truancy department before VanGoghGirl had reached the number of absences that trigger the mandatory reporting. She was really a great person. She gave me her phone number at work and she said that, if I needed to, I could call her and she'd come and pick up VanGoghGirl and take her to school on those days where The German simply couldn't leave me at home alone at all and I was unable to get up and go with him to take her to school.

Again, I was blessed because I had The German at home and, on those mornings when I could function without him for the hour or so, he was able to take her back and forth to school each day. If I had been a single parent, she'd have missed a lot more school. There was no way I could even walk to the living room and back sometimes, let alone get dressed, get in the car, drive down the highways back and forth, five days a week, with my back healing from surgeries and radiation. What about those young adult parents with cancer who don't have a caretaker available to help them 24 hours a day? What about those young adult parents with cancer who don't have anyone who can be a tutor, chauffeur, dietitian/personal chef, maid, and primary breadwinner all rolled into one?

These are just a few examples of what we face as young adults with cancer. You can find more information about this issue in the sites below. If you are a young adult with cancer, there are also some links to online communities aimed at those of us in this category. Please, check them out and, if you are a blogger, please consider writing about this issue.

Planet Cancer--When No One Else Thinks It's Funny, We're Here.
If you have cancer and you're not a member of this community, you have no idea how much you're missing! Seriously, if nothing else, you'll die laughing. ;)

Seventy K--Adolescent and Young Adult Cancer Advocacy
For over two decades there has been little or no improvement in survival for this age group. By signing this bill, you are supporting the Adolescent and Young Adult Cancer Bill of Rights to be established as a standard for care to meet the needs of this under-served population.

Vital Options
A great clearinghouse for links specifically aimed at young adults with cancer

I'm Too Young For This: A Place for Young Adults Affected by Cancer
Another great online community for and about us

mAsskickers--Your online destination for information and inspiration
They have many videos on cancer that you can access through YouTube


Anonymous said...

Thanks for sharing all of this with us.

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Lily said...

I found a prescription discount card that uninsured young adults can use to save money at the drugstore. It’s at The membership fee is only $4.50 a month. The savings are up to 80% depending on the drug. Drug prices are posted to check before enrolling. And they can cancel when they get a new job with health insurance benefits.