Our latest survey finds that protecting no-cost screenings and preventive care and reducing the burden of medical debt are the most impotant priorities for cancer patients and survivors. This survey also explores the impacts of cancer on food and nutrition insecurity, with impacts felt across income groups and coverage levels.
Survivor Views: Open Enrollment
- More than a third (38%) of cancer patients and survivors do not have a choice when it comes to their health care coverage and a majority of respondents would like more plan choices than they have.
- Seven in 10 (70%) would prefer to have a plan with a low deductible, but just 35% are enrolled in plan with a deductible lower than the IRS-defined high deductible of at least $1,400 per individual or $2,800 per family. Majorities of those enrolled in high deductible plans say it was their only choice.
- Cost is considered the most important factor when it comes to comparing coverage options (43%), but the right mix of covered benefits is also essential and cited most often as the reason (31%) for choosing their current plan.
- One-third (33%) say what they look for in their coverage changed as a result of their diagnosis. Lower costs, covered services, and choice of providers dominate these shifting coverage concerns.
- A plurality (48%) only feel “somewhat” confident making coverage decisions, and clearer information, better ability to compare, and access to a navigator are highest rated as desired improvements to open enrollment.
- Strong majorities support the provisions of the Inflation Reduction Act expanding marketplace subsidies and capping part D out-of-pocket drug spending for Medicare beneficiaries.
Detailed Survey Findings
More than a third do not have a choice when it comes to their health care coverage
Most would prefer a low deductible plan, but only 35% have one
The groups differ significantly when it comes to the type of deductible they have, and there’s a significant gap between what they have and the structure they would prefer. More than one third of those with employer-provided coverage (35%) are enrolled in a low deductible plan, along with 30% of the private-purchase segment. Those with employer-provided plans are much more likely to have a high deductible plan with a health savings account or HSA at 31%, compared to 11% of those with privately-purchased plans. Those with privately-purchased coverage are most likely to report high deductible plans without an HSA (57%). Respondents across the board, however, agree that they would prefer to have a plan with a low deductible. Among those with a high deductible plan, about two-thirds (64%) say it was the only option available to them.
Cost is the most important factor in comparing plans, but the right mix of benefits covered is essential and often the reason a plan is selected
Just over half (57%) actively shop for a health care plan every year, while nearly one-quarter only review their options when necessary due to changing circumstances such as a new job or family changes. A combined 43% say cost is the top factor they consider when choosing a plan, followed by choice of providers (21%) and selection of services (17%). However, a plan’s affordability doesn’t supersede the need for it to cover necessary benefits and services, which is cited by 31% as the main reason they selected their current plan. By comparison, 26% said they chose their current plan because it had the lowest cost, and 24% made their decision based on their preferred choice of providers.
Lower costs, covered services, and choice of providers dominate shifting coverage concerns after cancer diagnosis
Many of the comments about what specifically changed in terms of what they look for in their coverage mention choosing a lower deductible, reducing out-of-pocket costs, choice of doctors and providers, and specific treatments and services covered. The most frequently mentioned specific benefits and services covered include prescription drugs, surgery, specialists, imaging, and lab tests. Illustrative comments include:
What specifically changed in terms of what you look for in health care coverage since your diagnosis?
“I need to make sure that I have very comprehensive coverage, and high deductible plans are no longer an option considering my medical needs. I also do not want to change oncologists, so I need a plan that is accepted at her clinic.”“Before I never had to worry about my doctors being in network, or the coverage I had. I used to [search] a doctor by health plan, but now I can no longer do that due to all of the doctor appointments that I have. I also have to make sure that I have an open access plan because it’s too difficult to manage an HMO.”“Coverage in another state as well as at home. One year, of the two choices of plans I had, one plan only covered my hospital system at home and the other one only covered the hospital system I traveled to for treatment.”
“I look for access to a specialty oncologist and clinical trials at a cancer center. Expensive drugs and frequent lab and x-ray tests made these issues a bigger priority.”
“Are my doctors included in the plan? Medications? Surgery and test coverage?”
One in seven surveyed (14%) say that if they’d had different coverage at the time of their diagnosis, it would have made a difference in their treatment, and 13% felt they made the wrong choice or regretted their choice of health care coverage. When asked what might have been different in their treatment under a different type of coverage, many cancer patients and survivors mention specific treatments they needed that were not covered. Out-of-pocket costs, surgical costs, and choice of doctor or hospital were also top mentions. These comments generally focus on increased costs, protracted timelines, or limited options due to their plan. Representative comments include:
What specifically would have been different with a different type of coverage?
“I would have gone to a major cancer treatment center out of my local area.”
“Time was wasted when I had to first see a general surgeon and then appeal to my insurance to allow me to see the breast cancer surgeon who specializes in my type of cancer.”
“I would have been seen and diagnosed earlier at stage I or II, not pushed off and not seen until it was critical at stage III+.”
“I would not have had to fight my insurer for over a month to get a PET approved for my diagnosis.”
“I would be healthier, tremendously less stressed without having to constantly for two years find providers on my own to treat my cancer.”
“I wouldn't be in debt for treatment. I had a very large deductible when I was diagnosed.”
Not all those who feel a different type of coverage would have made a difference in their treatment had negative experiences. Those who had a good experience also acknowledged that they may have been impacted negatively by a less desirable plan:
“I wouldn’t have had as many options.”
“I would not have been able to get the care, life-saving medication, and the stem cell transplant that saved my life then.”
“If I did not have the coverage that I had, my treatment would have been much more stressful. My plan covered treatment at 100% and I know not everyone has that much coverage. I may not have been able to heal as well if I had to stress about the final costs. Others going through treatment are not as lucky.”
Many are only somewhat confident making decisions about coverage, and want clearer information, better ability to compare plans, and access to a navigator
Strong majorities support provisions of the Inflation Reduction Act impacting health care coverage
To ensure the protection of all participants in this initiative all research protocols, questionnaires, and communications are reviewed by the Morehouse School of Medicine Institutional Review Board.
The survey population is comprised of individuals who meet the following criteria:
- Diagnosed with and/or treated for cancer within the last seven years
- Over the age of 18 (parents of childhood cancer survivors were invited to participate on behalf of their minor children)
- Reside in the US or US territories
Potential Survivor Views participants were invited to participate through email invitations, social media promotion, and partner group outreach. Those who agreed to participate after reviewing the informed consent information completed a brief survey including demographic and cancer history information to inform analysis as well as topical questions as discussed in this document. The data were collected between January 2-22, 2023. A total of 1,279 cohort participants responded to the survey. Differences reported between groups are tested for statistical significance at a 95% confidence interval.