SeventyK.org
Economics are a bitch. Seventy thousand adolescents and young adults are diagnosed with cancer every year, but because more children and older adults get cancer, these latter age groups are the focus of research, treatment, and advice. From the perspective of funders and researchers, it’s justifiable economics. I can’t disagree with the logic. But it also means that over the last twenty years, survival rates for teens and young adults hit with cancer have improved only marginally, if at all. So from the perspective of people like me, seventyk.org’s effort to push an Adolescent and Young Adult Patient Bill of Rights is more than welcome. Thanks, again, to the organizers of I’m Too Young for This! for identifying another great partner.
Before I quote the video and the Bill of Rights, I should list a few things from my experience to offer some context.
My cancer was originally misdiagnosed as unexplained insomnia, thought to be the cause of my memory loss.
Despite having excellent health insurance, I would have been helpless without my fiancee and family at my side—not every young person is so lucky to have such aggressive and capable advocates.
My employer was awesomely supportive as well, but coming back to work from a challenging illness is not something an employer is used to dealing with. It took at least two months back at work before I was good at my job again, everything from how to handle the first day back after chemo to stupid things like remember where the good printing paper is kept. Every young employee needs professional support in learning how to excel at their job after a trauma. My employer offers that, I didn’t take advantage of it, and I wish I had realized earlier how much it would have helped.
And you’ll notice there are several points below that deal with starting a family. Infertility is probably the least known potential side effect of chemo. Hair grows back. You put the weight back on. But if your little duders get wiped out, they’re not coming back. So for any young men reading this, suck it up and make a deposit before treatment starts. I had to do it twice. It wasn’t bad at all. Although I did have to get in the car with my dad afterwards.
So view the clip, read the Bill of Rights, and go to www.seventyk.org to sign your name to the Bill, even if you’re a libertarian.
Adolescent and Young Adult Cancer Bill of Rights
We are neither pediatrics nor geriatrics,
we have unique needs- medically, socially, and economically.However, the rights and dignity of adolescent and young adults are
equal and vital to all individuals.We deserve to have our beliefs, privacy,
and personal values respected.Access to care is a right,
not a privilege.Our rights, as we perceive them to be and intend to preserve them, are:
1. The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.
2. The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.
3. The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.
4. The right to be informed about available clinical trials and given reasonable access to them.
5. The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.
6. The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.
7. The right to “generationally applicable” psychosocial support.
8. The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.
9. The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.
10. The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.Preserve our potential.
