On World Cancer Day, Stories of Courage and Support

The Union for International Cancer Control (UICC) is a global organization based in Geneva that partners with cancer societies around the globe as well as the World Health Organization and the World Economic Forum create a united front to allow greater equity and to reduce the global burden of cancer. UICC has declared February 4th as World Cancer Day and according to their website, there are 770 activities planned around the globe to mark the importance of the day.

At The American Journal of Managed Care, we would like to acknowledge the determination of cancer survivors and the support provided by various organizations to patients and their families.

A Survivor and an Advocate

Debra Madden became an active cancer research advocate following her second cancer diagnosis at the age of 42 years. Nearly 20 years earlier, she had been diagnosed with Hodgkin’s lymphoma and subsequently developed late treatment effects, including cardiotoxicity and breast cancer.

Here’s how she describes her experience, “Years following my angioplasties, during a routine follow-up visit, my cardiologist shared with me that I was the first patient he’d diagnosed and treated for radiation-induced coronary artery disease due to cancer treatment. And I know that his advocacy on behalf of patients has extended far beyond my original case.”

Several organizations are supporting patients and survivors cope with cancer and its aftermath, including providing a voice to access innovative and personalized treatment, fertility preservation, and financial support.

Supporting Personalized Care in Cancer

Precision medicine will perhaps establish some of the most important biomedical innovations of our generation. However, for that future to become a reality, we have to create an access and reimbursement environment that is conducive to precision care, according to Alan Balch, PhD, CEO of the Patient Advocacy Foundation (PAF) and its advocacy affiliate, the National Patient Advocate Foundation (NPAF).

In the August 2015 issue of Evidence-Based Oncology, Balch writes, “Precision medicine will perhaps establish some of the most important biomedical innovations of our generation. We at NPAF, the advocacy arm of PAF, fully support wide-ranging investment in innovative, personalized medicines—especially in oncology. However, for that future to become a reality, we have to create an access and reimbursement environment that is conducive to precision care. He believes that changes in clinical pathway adoption, clinical trials, and reimbursement models to accommodate precision medicine will allow physicians to pursue treatment options that hold the greatest promise for personalized treatments.

Fertility Support

Raising awareness on fertility preservation among cancer patients as well as care providers is a growing need. And the LIVESTRONG Foundation is committed to helping out.

In 2014, the LIVESTRONG Foundation developed an online training program for healthcare professionals to address this need.16 LIVESTRONG Fertility Training for Healthcare Professionals is an interactive online training course designed to engage healthcare professionals as they learn to communicate with patients about fertility risks and family-building options as a result of a cancer diagnosis and its treatment. Additionally, the course provides tools and resources for organizations to establish a systematic approach to fertility at an institutional level.

Financial Support

The Patient Access Network (PAN) Foundation is a charitable organization that provides underinsured patients with the financial support they need to meet cost-sharing requirements for breakthrough therapies and other costly cancer treatments. PAN was established more than 10 years ago, partially in response to the development of the Medicare Part D prescription drug benefit. Since then, PAN has evolved with the Part D program and the trend among public and private payers to develop separate benefit approaches for specialty drugs, including the use of limited distribution channels and higher cost-sharing requirements.

To help younger patients get their life back on track The Samfund has developed various support programs. As they wrote in Evidence-Based Oncology, “The Samfund is proud to be the first and largest organization in the United States uniquely designed to help young adults (YAs) recover from the financial impact of cancer. It was founded in 2003 by a 2-time YA cancer survivor to provide financial assistance to YAs post treatment, regardless of diagnosis or where they live. Since 2005, The Samfund has distributed close to $1.5 million in grants and provided free online support and education through its website to YA survivors across the country facing great financial need due to cancer.”

Stories of Courage

But finally, it’s the spirit and determination of the patient that is the winner.

“If I could give my 16-year-old self any advice when I was diagnosed, I would probably tell him that it’s going to suck a lot. Your cells are going rogue and the fact that they are turning on you in no way reflects on you as a person. There are a lot of people out there who want to help you, and it won’t hurt that much for you to let them. It’s worth putting in the extra effort to get it right instead of jumping into something quickly because you feel that’s what you’re supposed to do. Also, girls named Heather are trouble and should be avoided,” writes Woody Roseland.

Woody is a 25-year-old 8-time cancer survivor, who, in his own words, pays his rent by producing short films for companies and nonprofits. Woody is an active member and advocate for the adolescent and young adult cancer community, working to raise funds for fellow cancer patients and survivors.