You know when you check into a hospital for a procedure, a test or an ER visit, after you fill out miles of paperwork they hand you a couple of pieces of paper to keep. One is usually that dreaded “Five Wishes” pamphlet that, should you choose to take the time to fill it out, may serve as a makeshift last minute will and testament. And the other is something called ‘A Patient’s Bill of Rights’ which typically explains that you have the right to complete and comprehensive care whilst visiting said hospital. Some people find this bill necessary to their own emotional well being because they’ve felt mistreated by the medical establishment as a direct result of their particular “status.” I think this is most common among patients of low income status, people who have AIDS, gay and lesbian patients, etc. Until recently, I never thought I’d fit into one of these categories of patients who feel desperately left out.

Overall, I have received excellent care from my doctors and nurses in the past 6.5 months (not counting a couple of doctors with super lame bedside manners!). But I have felt, I don’t know exactly how to describe it…a severe lack of understanding of my status as a young adult with such an advanced stage of cancer. When I met with that group of other young adult cancer survivors early last month, one of them related his story about after he was first diagnosed with testicular cancer, and he went to another doctor for a second opinion, the doctor actually told him, “You can’t have cancer. You’re too young!” Ha FREAKING HA, Dr. Smarty Pants. Sure, that may just be something he thought would be funny and light hearted to say to his new young and spry-looking patient. But look at it from a different perspective: if an 80 year old man came to him for a second opinion of his testicular cancer diagnosis, would it be just as acceptable for him to say, “AH! No wonder you have cancer! You’re so old, it’s a wonder you made it this long without getting cancer!” That would be considered disgraceful, tacky, and, possibly, grounds for some kind of lawsuit.

This sort of thing goes on all the time all over the country. I’ve found it very hard to find adequate emotional support for myself and Honey as young adults dealing with such an advanced stage of cancer. There are all sorts of support groups out there for geriatric and pediatric cancer patients and the majority of the medical community I have been in touch with seem only able to offer these to me. What would I have in common with a 75 year old woman with a brain tumor or breast cancer? Sure, chemotherapy is chemotherapy and we can all bitch and moan together about how fun that is. But what about our futures? That’s where we lose our common ground completely.

And that’s just the tip of the iceberg. But I am the kind of person who would rather do something to help motivate a change in this area than sit and bitch for hours on end about how unfair it is. That’s really what this post is supposed to be about.

Today I received a notification about this site, SeventyK.org. It is an advocacy group representing the “70,000 children, adolescent and young adult patients in this country who are diagnosed with cancer every year.” The group is devoted to raising “awareness to the lack of rights that these patients have in the organized medical world.” They have composed a Bill of Rights specifically designed for the pediatric, adolescent and young adult cancer community. Here is the bill in its entirety:

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:

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.

The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.

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.

The right to be informed about available clinical trials and given reasonable access to them.

The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.

The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.

The right to “generationally applicable” psychosocial support.

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.

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.

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.

Click on each item above to read more details about what all it entails. I think this whole bill is not only appropriate but completely necessary for all cancer patients between the ages of 15-39 and the medical community across the country that works with these patients.

SeventyK’s goal is to not only raise awareness of this issue but to “have the Bill of Rights implemented at all hospitals, so that in the future when a young patient is admitted this Bill of Rights is the standard for any young adult cancer patient.”

Please take a moment and click here to help me support this Bill of Rights! The more digital signatures they get, the stronger it becomes and hopefully, someday in the not-too-distant future, we can offer this Bill of Rights to the 70,000 young adult patients newly diagnosed with cancer. Thank you!