Bill Aims to Improve Cancer Survivorship Plans for Medicare Recipients

Cancer does not discriminate against party lines. Going through the disease could be as mentally draining as it is physically, as patients and their loved ones navigate treatment options and survivorship plans. Two congressmen and cancer survivors, Mark DeSaulnier (D-CA) and Ted Poe (R-TX), know this firsthand.

The two representatives, who are co-chairs of the Congressional Cancer Survivors Caucus, introduced H.R. 5160, known as the Cancer Care Planning and Communications (CCPC) Act. If passed, the bill would make cancer care plans more available to patients on Medicare by creating a billing code that would reimburse providers for their time and resources used to create the care plans.

“What they can bill for now is the face-to-face time to give the plan to the patient. But that doesn’t account for the behind-the-scenes teamwork that goes into crafting the plan,” Shelley Fuld Nasso, CEO of the National Coalition for Cancer Survivorship (NCCS), said in an interview with CURE.

The care plan would include information on the treatment a patient was given, including potential side effects and adverse events to look out for.

“I see it almost as a patient passport that you can have and bring back to your primary care physician or if you move to another location or get another late effect and have to see another oncologist,” Nasso said. “All the critical information is in there.”

Crafting cancer care plans is a crucial step in providing each patient with the individual care that is best for them. This can improve outcomes, according to Donald (Skip) L. Trump, M.D. FACP, CEO and Executive Director of the Inova Schar Cancer Institute in Virginia.

“The data show clearly that personalized and coordinated care leads to better outcomes — including longer survival,” he said in a press release. “Cancer care is more complicated – and successful; it is critical that physicians and patients be full partners in their treatment, that the overall plan of treatment and post-treatment care be fully developed and communicated. That’s what the Cancer Care Planning and Communications Act is promoting.”

Lee Jones, a patient-turned-advocate, explained that having such a plan would have been immensely helpful when he was going through cancer treatment. Jones was diagnosed in 2004 with stage 4 colon cancer, and then had half of his liver resected two years later.

“Maybe it’s because of chemobrain or just getting older, but it’s really hard to remember all the things going on and what you’re supposed to be doing,” Jones said in an interview with CURE. “Having a plan would really be much better, especially for those without caregivers.”

Jones said that he was lucky to have his wife as a caregiver who could document important information and ask the health care team questions.

“I had my wife going with me and writing down things. Of course it was helpful, but not everybody had that,” he said.

Jones said that his treatment was pretty cut and dry more than a decade ago. But since then, medical advances have brought a lot of new treatment options to the cancer scene, including immunotherapy, that may make it even more important for patients to have these care plans.

“With the immunotherapy drugs that many people are getting these days, side effects are much more severe and complicated than those patients faced back in the day when they were just getting chemo,” Jones said.

While immunotherapy side effects may seem severe, most of them are actually predictable and manageable — if the patient and their caregiver know what to look for, Nasso said. For example, if patients better understand their treatment, it could help in avoiding unnecessary hospitalizations.

Now, Nasso encourages patients, survivors, caregivers and advocates to call their local Congress member to vote “yes” on the bill.

Jones is hoping that passing CCPC will enable more people to have the same outcomes he did.

“One of the reasons I became an active patient advocate is because I was really fortunate to be alive and healthy 14 years after being diagnosed with essentially a fatal disease,” he said. “There’s been a big increase in survivorship, but it’s still not enough. I want to do everything to show patients that they can have the same kind of outcomes that I did.”

Correction: An earlier version of this article incorrectly identified the stage of disease for which patient-advocate Lee Jones was diagnosed with. Lee Jones was diagnosed with stage 4 metastatic colon cancer, not stage 3 as previously reported. We apologize for the error, which has since been fixed on June 18, 2018.