Early on in my five-year research stint on young adult cancer, I learned about the down sides of the American Cancer Society. They have no direct support services, education, or research targeted to young adult cancer patients. But let’s not throw the baby out with the bath water. Here is why I love American Cancer Society anyway.
Check this out: Young adults are the largest group of underinsured and uninsured adults in the United States. This plays a huge part in our delayed diagnosis, and is a big reason why young adult cancer survival rates have not budged in 30 years. Health insurance is one of our biggest barriers to survival, but who in the cancer community is stepping up the plate to talk about this? Almost nobody but the American Cancer Society’s Cancer Action Network (ACS CAN).
I got a press release from ACS yesterday that calls upon Congress to enact legislation that will ditch evil pre-existing condition exclusions from health insurance. ACS CAN is asking legislators to make sure subsidies are available for cancer patients who can’t afford treatment. ACS CAN spoke out about improving access to palliative care and so much more. I get emails daily from young cancer survivors writing about these very issues.
When I was writing a section in my book about how young adult cancer survivors can make a difference, ACS was the only cancer org I found mobilizing to influence long lasting change around access to healthcare. Only they truly understood that we have to use the power of our voices and votes to change cancer survival rates. What could be more worthwhile?
Do you support the American Cancer Society? Have you participated in fundraising efforts or action center? What other kinds of services have they provided you with during cancer?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
June 19th, 2009 at 6:56 AM
Im REALLY angry at the ACS right now for the “official sponsor of birthdays” commercial. I know its probably just me, and its not a good reason to dislike them, but seeing that commercial begin airing right after my husbands death and right before his birthday really hit me hard.
I was dissappointed with their lack of direct support, I realize they have other goals and objectives and directives. But I still found the commercial to be in poor taste, even though Im sure to the general populous its happy and uplifting. To someone like me, who just lost a loved one at far too young an age, it was infuriating.
June 19th, 2009 at 8:27 AM
HAve you heard of “Michelle’s Law”? The ACS had a big hand in getting this piece of legislation passed… and it is all for young adults. It’s really neat you should read about it if you haven’t heard about it.
June 19th, 2009 at 4:14 PM
On Michelle’s Law: Yep, it is a fantastic example of change that can happen through policy work. For those of you who have read Everything Changes - remember Dana in Chapter 13: Fluke? She’s the one who had to take a leave from college to do in-patient chemo and in doing so got dropped from her student health coverage. Cancer and no insurance. Bad combo. A young woman in New Hampshire named Michelle had to take a full class load to keep health insurance during her colon cancer. After she passed away, her parents did something huge about it. They worked with the American Cancer Society to pass Michelle’s Law. As a result of this law, insurance companies are required to cover students who are on medical leave for up to 12 months. It is important to note that even though this law exists, many insurance companies still pretend they don’t know about it and try to kick students off of their insurance for medical leave. Spread the word about Michelle’s Law and help others advocate for their legal rights! Secondly, Charissa, I can completely see how the ACS commercial would set you on fire. Sounds like you have every right to feel pissed about that message in the face of your husband’s death.
June 19th, 2009 at 5:08 PM
Yep, I haven’t always liked everything about ACS, but I love them for many of the good things they do.
Thanks for the tip about ACS CAN.
So far I’ve also been okay with the Lymphoma & Leukemia Society’s Advocacy Center: http://www.capitolconnect.com/lls/
And the Lance Armstrong Foundation Action Center: http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661029/k.CA36/Advocacy.htm
For general health care reform issues, Consumers Union, the non-profit publisher of Consumer Reports has been an okay advocacy tool for me so far: http://www.PrescriptionForChange.org
Thanks for the great advocacy post and supporting palliative care.
Always,
Luke
June 19th, 2009 at 7:28 PM
They definitely do good work and I am grateful for that! I dont mean to imply otherwise.
June 20th, 2009 at 1:33 PM
Hi Kairol,
The ACS is okay but my mom didn’t like their feel good… hair and make-up phliosophy, she walked around wigless in the house and never wore make-up in her life. I agree with the person who wrote that the new ACS Ad campaign is hard for me to watch too. My parents were 65 and 66 respectively and haven’t celebrated birthdays in a while. Until all cancers are cured, ACS should word their advertising to people who have lost loved ones to cancer, not just survivors and people fighting cancer, but I love those people who are fighting cancer and those who have survived very much but it is difficult to watch a happy commercial for the ACS. That’s my point of view on that. Hope that wasn’t too harsh.
Anita
June 21st, 2009 at 11:57 AM
I’m Canadian, so I don’t have a perspective on the American Cancer Society but it’s very interesting to hear about.
June 22nd, 2009 at 1:29 PM
I do understand the struggles that you and many others have had with the American Cancer Society (ACS). I personally have been a very active volunteer with ACS for many years, even before my dad was diagnosed with cancer in November 1999, and before my own cancer diagnosis on November 2004. The American Cancer Society Caner Action Network (ACS CAN) is the sister organization to ACS. It is its advocacy side, and they are very hard at work thanks to the thousands of volunteers. Most of those volunteers are what ACS CAN calls Legislative Ambassadors, which I am one of. Basically it is a fancy title and their job is to get these types of messages out to our local Congressmen and women. In September 2006 I went to Washington DC with ACS CAN as part of “Celebration on the Hill” and met with my local Congressman (Gary Ackerman, District 5 in NY) as well as got to meet with Chuck Schumer and Hilary Clintons aide (she was in NY that day). When ACS CAN send out alerts to their ambassadors we send out emails, make phone calls or even show up at the local offices of our congressmen and senators. In regards to the birthday celebration commercial I do understand how it can be upsetting to many. I lost my dad just a few months before his 64 birthday and there are no more birthdays for him, BUT I treasure every birthday that I have celebrated since my own diagnosis. I count my blessing everyday that I am lucky and privileged to have great medical insurance and to have access to the care I need when I need it, and I am determined that everyone should be have the same type of access. Thanks!
June 22nd, 2009 at 7:41 PM
When my dad was in the last stage of melanoma, the ACS helped us find proper hospice care, counseling, and helped us prepare for the vultures at the funeral home. After he passed, my mom got into a grief counseling group through the ACS. I’ve been a supporter either in volunteering, R4L participation, or direct contribution for 16 years. While many may desire direct financial support from the ACS, I feel their information, advocacy, and research support are well worth putting support behind them.
June 25th, 2009 at 1:59 PM
Some of you have emailed asking the great question about what is the relationship between ACS and ACS CAN and does any money raised for ACS go to CAN and their legislative efforts. I contacted CAN and this is what they said:
ACS does grant money each year to ACS CAN to help with their health care reform campaign. Additionally, ACS dollars go to things like the Health Insurance Assistant Service, Hope Lodge, Patient Navigator program and the research around what lack of access to health care means - all of which are part of the “access to care umbrella.”
If you want to control how much of your money goes to ACS CAN you can donate directly to them, but remember that because they are a 501(c)4, this donation is NOT tax deductible.
I think it is really great to donate to c4’s because they get to lobby and we need people lobbying for our rights! Who cares if I get a tax deduction? I make so little money that a tax deduction is irrelevant for me anyway.
June 26th, 2009 at 10:56 PM
We were told my mother was dying the day that the American Cancer Society launched their birthday campaign. It was only 2 weeks after my mom turned 69. She died 4 days after the birthday commerical first aired. I love the commercial and what it means. Together we are creating a world with more birthdays…and even though the timing of the commercial was horrible, my mother fought her battle with cancer for 5 years… 3 years longer than expected. I wanted more birthdays with her…and I want many more with my children. So yes… it makes me very sad to think about the lost birthdays… but really, it’s what they do…create survivors.. Happy Birthday is a Victory Song. I love that.
September 1st, 2009 at 9:50 PM
I am a 25 yo sarcoma survivor who happens to work for the ACS. I completely understand everyone’s concerns on this page! I (of course) support the ACS and all their efforts but at the same time I understand the criticisms too. Being the largest non-profit in the fight against cancer means that we are not always going to keep everyone happy. That said, each ACS employee wakes up each morning hoping this is the day we don’t have a job to go to. We are one of the very few organizations in the world who are working hard each day to put ourselves out of a job!
Please keep the comments up though… it is always great to know what other young survivors think!
One last comment…. the reason I work for the ACS is because when I was going through my cancer journey, the ACS was the only org that listened, helped me (in person) and could tell me where to go next! I appreciate that they were there for me and I am very lucky to be able to do that for patients now…. :)
September 2nd, 2009 at 12:46 AM
Hey Brandi - Thanks for your work and for you comment! I got an action email today from ACS CAN and had a long moment of deep appreciation for all that org is doing! So few others are stepping up to the plate to talk about healthcare reform and cancer. I am glad ACS is doing it.
Kairol