This article has been co-authored by Marcy Fitz-Randolph, DO, MPH, Manager, Research Operations, PatientsLikeMe; and
Margot Carlson Delogne, vice president, Corporate Communications, PatientsLikeMe.
As Congress and the White House continue to discuss what should be in and out of a national healthcare law, PatientsLikeMe
recently released results from the first large-scale poll to assess patient priorities for the healthcare law. The poll’s 2197 respondents are among the estimated 133 million Americans living with chronic conditions. Just over 10% of them, or 242 respondents, are living with cancer.
The poll, fielded in late January, gives voice to those who were anticipated to be most heavily impacted by changes to the law. Key findings show that overall, cancer patients have the same concerns as the general population about healthcare costs, but see benefits in the law that the healthy may have overlooked:
More than half (58%) believe the Affordable Care Act (ACA) has been helpful to people living with chronic conditions.
Nearly half (49%) feel the ACA needs only minor modifications to improve it.
Over the last year, their out-of-pocket expenses for healthcare have either stayed the same (48%) or increased (42%).
Lowering costs is a priority for both cancer patients in the PatientsLikeMe poll and for the general population, which took part in a December 2016 Kaiser Health Tracking Poll. Lowering the amount individuals pay for healthcare is an important priority for 92% of cancer patients and 93% of the general population. Lowering the cost of prescription drugs is an important priority for 96% of cancer patients and 89% of the general population.
Half (50%) of PatientsLikeMe poll respondents living with cancer felt that a repeal of the 2010 ACA “should not be done,” while one third (31%) of the Kaiser general population felt it “should not be done.”
When asked which 1 component of the ACA they would eliminate if they were forced to choose, PatientsLikeMe cancer respondents were 4 times more likely to say they would eliminate the individual mandate vs other components of the ACA.
When asked which 1 component of the ACA they would keep if they were forced to choose, PatientsLikeMe cancer respondents were 6 times more likely to say they would keep mandatory coverage for pre-existing conditions vs other components of the ACA.
Several respondents shared with researchers about their experiences with the ACA and their concerns about not having a similar health plan. Scott Mullins, a PatientsLikeMe member from Michigan, said “I have never had healthcare coverage before. The ACA made it possible for me to get treatments for my degenerative disc disease, brain cancer, and other much needed healthcare issues. I am grateful to have such a medical plan as I cannot work or afford to pay for coverage.”
Shelly Engfer-Triebenbach, a member from Minnesota, concurred. “Having cancer is expensive. Most patients, myself included, would die without necessary care. Healthcare should be available to all regardless of previous medical conditions.”
Tania Storm, from Salt Lake City, described an even more desperate situation. “I am a 57-year old woman with multiple myeloma. I was diagnosed 10 years ago. Due to the aggressive nature of my cancer, I was forced to quit my 35-year career in the hotel hospitality industry. I have exhausted my savings, my 401K's and my "Go Fund Me " account. I have very few resources should any of my healthcare finances change.”
PatientsLikeMe Poll Methodology
Between January 23-27, 2017, PatientsLikeMe fielded a 19-question poll to a sample of its members in the United States who are living with chronic or progressive degenerative conditions. A total of 2197 patients (of which 242 were cancer patients) completed the poll, which asked both original questions and questions from a December 2016 Kaiser Health Tracking Poll
to compare patient and general population responses.