Sunday, August 03, 2008

Admit it - it is all about the money.

Money - cancer eats it like it eats into our bodies. Millions of people around the world donate money for cancer, but the money usually goes for research, not to the individual patients. Research is necessary, but I pray for the day when cancer patients - people currently undergoing treatment and life-wrenching decisions - don't have to have spaghetti fund raisers or bake sales or pawn their possessions to pay for the humongous costs involved with treatment.
I was blessed with a good job, good insurance (a benefit I considered years ago during my job interview before even salary amount, thank goodness), a lower standard of living, and very generous friends, so I kept my house, had transportation, and wonderful emotional support. Not all cancer patients are that lucky. I have learned of a woman through the Assertive Patient blog that is in need of money. Here is the link to her story, which links to a PayPal account should you wish to donate directly: http://www.assertivepatient.com/2008/08/send-money-an-o.html.
I don't want her or anyone else to wait on donations from strangers, so I went out hunting down sources of financial help. I didn't find many.

Since the woman in this instance has a small child, I figured Medicaid might also come into assistance (the story says she is already on disability). She could check here:
http://www1.dshs.wa.gov/. Interesting that the Washington state DHHS slogan is "People helping people". I sure hope that is true.

Here is a page of links at the National Cancer Institute that may or may not be helpful. Hey folks, if any of these web resources don't link to enough information, please give them feedback and ask for more specific links - humans are on the other end of most websites, and they need to know if they are providing a good service or not. http://www.cancer.gov/cancertopics/support.

The American Cancer Society helps a bit, but I think only while you are in current treatment. http://www.cancer.org/docroot/MIT/content/MIT_3_2X_Medical_Insurance_and_Financial_Assistance_for_the_Cancer_Patient.asp

The patient information site by the American Society of Clinical Oncology lists some links for financial assistance. (They should - it is in their best interest to make sure we can pay for their services, folks.) http://www.cancer.net/patient/Library/Cancer.Net+Features/Financial+Support+Resources. The page hasn't been updated since 2005, though, so I won't hold my breath that there are actual helpful links there.

There is an assistance page at the CancerCare website: http://www.cancercare.org/get_help/assistance/index.php.

The National Coalition for Cancer Survivorship is pretty silent about actual service points for financial assistance - interesting, since that is probably the BIGGEST issue for survivors: http://www.canceradvocacy.org/.

The Patient Advocate Foundation offers personalized assistance, so they may be able to identify other sources of financial help (someone let me know if that is true - not apparent from their website): http://www.patientadvocate.org/.

Thanks to Whitney's reminder to me (her comment is attached to this post), please remember that in some of the larger communities, you can contact 211 and ask for help in locating assistance and support. You can locate your 211 call center on this page: http://211.org/ReferWeb/MainForm.aspx.

Of course, anyone facing cancer or having survived cancer should talk with the social work department of the hospital where they received care, and ask for direct assistance with locating financial support. Don't just let them hand you a big binder of information - sit with them and go over the options in person. Heck, if we could figure out what sources exist, we would have done it on our own. Keep the social workers employed, and ask them to focus on your personal situation. That is what they went to school for, after all.

This search for and collecting continuing financial support sources for cancer survivors and their families, REAL financial support, appears to be a great grant opportunity for someone. With nearly 12,000,000 cancer patient survivors out there in the US, a lot of us need financial support even AFTER treatment - we shouldn't have to cobble sources together on our own. We need to demand those that currently collect and disseminate financial information related to in-treatment issues to do the same for after-treatment support. The need for financial support does not end the last time you go behind the radiation door (where no one else goes with you), or when the last round of chemo is taken. It is ongoing. And with us living longer after treatment, it is going to be an even larger issue. As I said, cancer research needs money to continue to make headway - but survivors need potentially a dollar-for-dollar match to those research funds to get back to living after treatment. Can you imagine what it would be like if on the day you were diagnosed with life-changing cancer, they cut you a check for the anticipated out-of-pocket costs related to being a cancer survivor for the next 10 years? You could create a fund like a 401k to keep up with the extra costs, particularly if you aren't able to continue working, and keep your head above water/sleep well at night/heal without worry. Yeah, I would like to see that happen.

4 comments:

Jeanne said...

Teri--thanks so much for posting this and for doing the research for Andrea. I know she is on Medicaid, but not sure about all the rest. I'll pass on your post.

Jeanne

www.assertivepatient.com

Whitney said...

Teri, this is a great post that I am sure will be of help to many people.

I would also recommend that in communities that have the service, calling 211 can provide a lot of information. These are social services helplines run by the United Way. We refer all kinds of people who are in need of assistance to 211, usually with good results.

It is not cancer-specific, of course, but it's good help--it can be daycare assistance, getting on food stamps, tax credit eligibility--every little bit helps.

Keep up the good work, SuperWoman!

debutaunt said...

Thanks for compiling this information. For those who have or had blood cancers, the Leukemia & Lymphoma Society is a good resource. They offer some financial assistance with expenses, medications and co-pays. There are also links to info on insurance issues and a great forum of leukemia patients and caregivers.

http://www.leukemia-lymphoma.org/all_toplevel.adp?item_id=4184

Zoe and I fundraise for them as 75% of the money goes towards research and unlike most charities, they don't pay for marketing.

Sorry I missed you in Seattle. Hoping I'll get to meet you soon :)

Tracy said...

Thank you for compiling all of this information, Teri. Surely it will be of help for some. One other possible resource: National Patient Advocate Foundation, which can be found at: http://www.npaf.org/

 
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