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'What Can I Do?'
April 22, 2019 – Martha Carlson

'What Can I Do?'

How a single phone call can change cancer outcomes and improve patient lives.
PUBLISHED April 22, 2019
Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.

"What can I do?"

I used to hear that a lot from my friends and family. I don't hear it so much anymore but I'm not complaining – I look healthy and aside from stage 4 cancer, I am pretty healthy. These days, I hear it more from people similarly diagnosed or who love someone with cancer.

"What can I do?"

They aren't always asking about bringing meals, doing the shopping, caring for kids. Many times, these volunteers-in-waiting want to take action to change the picture for people living with cancer. This is one of the reasons I really enjoy attending cancer and health events in my area. "You want to help?" I think, "Let me show you what you can do."

These days, continuing efforts from last year, I've spent time talking about two very important pieces of federal legislation that have been introduced in the House of Representatives, both of which need more widespread support from our Representatives.

How do you get sponsors to sign on and/or support legislation? Sometimes they just do it; sometimes they're persuaded by other politicians; and sometimes people like you and me can convince them to add their names. If you are wondering how to take a first step toward cancer advocacy at the legislative level, let me encourage you to contact your Federal Representative and ask that he or she signs on as a sponsor to H.R. 913 and H.R. 2178.

You can find your representative here, and learn how to best contact him/her. You can ask to speak with the person handling health issues and tell your story about why this legislation matters; you can also write to your Representative and explain the same thing. If you were wondering what "advocacy" is, this is one part of it that we can do from home:

H.R. 913 Clinical Treatment Act can be read about here and is bipartisan legislation that would increase the clinical trial participation of people receiving Medicaid. It would achieve this by guaranteeing the coverage of routine care costs (such as physician visits and blood draws) of Medicaid recipients participating in clinical trials. Currently, these routine costs (what would likely be covered if the person wasn't in a clinical trial) are covered by Medicaid in some states and not others.

This Federal legislation is important because clinical trials have an under-representation of minority and ethnic groups, a portion of whom are insured through Medicaid, which means study results may not reflect them, according to the FDA. Not surprisingly, there are health disparities in cancer care and, since clinical trials often provide people with the best clinical option, these disparities also could be reduced through this legislation. Across the United States, nearly 20% of the population is insured through Medicaid; for patients with cancer, this legislation offers real hope for improving care and extending lives.

H.R. 2178 Metastatic Breast Cancer Access to Care Act can be read about here and is a bipartisan effort that could change the lives of people diagnosed with this disease. Although metastatic breast cancer can be treated for a period of time that varies by the individual, it is incurable and the average life expectancy remains 36 months. The disease and its treatments can make it difficult or impossible to continue to work regardless of the age of diagnosis. Right now, a person found to be disabled for the purposes of Medicare and Social Security Disability Insurance (SSDI) must wait 24 months to enroll in Medicare and 5 months to receive SSDI benefits. With an average life expectancy of 36 months, this waiting period - during which the person will need to support herself, her family and receive medical care – means not only hardship but also that she (or he, since men also get breast cancer) may never receive the benefits at all.

This legislation would waive both waiting periods for eligible people with metastatic breast cancer.

It takes just minutes to contact your representatives, and doing so could make a very real difference for many people across the U.S.

Continue the conversation on CURE’s forum. >>
Talk about this article with other patients, caregivers, and advocates in the Lung cancer CURE discussion group.

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