Our latest Survivor Views survey sees increases in biomarker testing since the question was last asked three years ago along with reduced cost and coverage barriers in that time. Cancer patients and survivors describe the benefits and overwhelmingly agree biomarker testing gave their providers information that improved their treatment.
Survivor Views: One in Ten Impacted by Recent Drug Shortages
The American Cancer Society Cancer Action Network (ACS CAN) empowers advocates across the country to make their voices heard and influence evidence-based public policy change, as well as legislative and regulatory solutions that will reduce the cancer burden. As part of this effort, ACS CAN deploys surveys to better understand cancer patient and survivor experiences and perspectives, through our Survivor Views research panel. The panel is a group of cancer patients and survivors who respond to regular surveys and provide important insights to support ACS CAN’s advocacy work at all levels of government.
Fielded September 12-25, 2023, our latest survey explores the impact of recent drug shortages on cancer patients and survivors, as well as experiences with telehealth and biomarker testing. The web-based survey was conducted among 1,222n cancer patients and survivors nationwide who have been diagnosed with or treated for cancer in the last seven years.
- One-in-ten of those in active treatment have been impacted by recent drug shortages, with Medicaid enrollees most likely to be impacted (22%).
- Those impacted cited difficulties finding substitute medications (68%), treatment delays (59%), and difficulties related to insurance coverage, such as coverage for an alternate therapy.
- Over three-quarters (77%) of survey respondents who have had biomarker testing agree that the results gave their provider valuable information that led to better treatment.
- 77% of those who have not had biomarker testing would like to have it if they were a good candidate for it, however most (69%) did not discuss it with their doctor.
- Nine percent did not have biomarker testing due to cost or coverage concerns.
- Four-in-five agree it is important for cancer patients to have access to telehealth services from out of state providers.
Summary of Results
One-in-Ten Cancer Patients in Active Treatment Have Experienced Recent Drug Shortages; Medicaid Enrollees Impacted Most
Ten percent of survey respondents who have been in active treatment during the past twelve months have been impacted by drug shortages during that time. Those enrolled in Medicaid are significantly more likely to report being impacted by drug shortages at 22%. Among those who have been impacted by drug shortages in the past year, 57% say the shortage was related to their cancer care, including medications to treat cancer as well as its side effects and complications. Nearly a third of those experiencing drug shortages report the shortage was of a treatment medication such as chemotherapy or immunotherapy. Just over a quarter faced a shortage related to a psychiatric drug such as to treat anxiety, depression, or ADHD and 22% mentioned a shortage of a pain medication.
The most common impact among those facing a drug shortage related to their cancer was delayed or missed treatment, reported by 45% (chart). Thirty-eight percent of those who faced delays in their cancer treatment report delays of a month or more. Twenty-three percent were able to use an alternate drug, while most (68%) were unable to identify an effective substitute. Thirty-five percent had difficulty using their insurance to fill a prescription related to the shortage, such as facing delays covering a substitute drug. Fourteen percent were ultimately able to find the drug before treatment was delayed, and six percent continued on the medication with a dose change.
Representative quotes on the impacts of the drug shortage:
“My doctor office only gets enough for one patient a month. I'm currently set to get mine in over six months.”
“It has extended my treatment which adds to the stress level and horrible side effects.”
“Had to have the shots implemented differently which caused a lot more discomfort and pain. The side effects were different and a bit worse for days following the treatment."
“When I can’t get my pain medication I can’t function properly throughout the day. My legs hurt and want to give out on me.”
Two-in-five of those facing drug shortages related to their cancer in the past year say the shortage has since resolved and their drug is now available. One quarter are continuing their treatment but with increased or unmanaged side effects due to the shortage. Twenty-two percent remain on a substitute drug or dosage and 2% report that their treatment is currently on hold while they try to find the drug or a substitute.
Patients and Survivors Overwhelmingly Agree Biomarker Testing Improved Their Treatment
Many of those who did not have biomarker testing (35%) simply weren’t a good candidate for it, but 69% never discussed it with a provider. Seventy-seven percent of those who did not have biomarker testing agree they would want it done if they were a good candidate for it.
Cancer patients and survivors who have had biomarker testing describe many specific ways their experience benefitted from the testing, particularly when it comes to having the peace of mind that the best treatment plan was followed as a result. Some representative quotes from patients and survivors follow:
How might your experience have been different if you hadn’t had biomarker testing?
“I was given 6 months to a year to live. The biomarkers led me to an immunotherapy trial that saved my life.”
“Biomarker testing entered me into a treatment plan that has given me a complete response after failure of two prior plans.”
“We would be less certain about the optimal treatment plan, based on clinical knowledge and standards in place today.”
Maintaining Access to Telehealth Services from Out of State Providers is Important to Cancer Patients and Survivors
ACS CAN’s Survivor Views research initiative was designed to support the organization’s efforts to end suffering and death from cancer through public policy advocacy. Data provided by cancer patients and survivors as part of this project allows for a greater understanding of their experiences and opinions on cancer-related issues and gives voice to cancer patients and survivors in the shaping and advocating of public policies that help prevent, detect, and treat cancer and promote a more positive quality of life for those impacted.
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 September 12-25, 2023. A total of 1,222 cohort participants responded to the survey. Differences reported between groups are tested for statistical significance at a 95% confidence interval.
About ACS CAN
The American Cancer Society Cancer Action Network (ACS CAN) advocates for evidence-based public policies to reduce the cancer burden for everyone. We engage our volunteers across the country to make their voices heard by policymakers at every level of government. We believe everyone should have a fair and just opportunity to prevent, detect, treat, and survive cancer. Since 2001, as the American Cancer Society’s nonprofit, nonpartisan advocacy affiliate, ACS CAN has successfully advocated for billions of dollars in cancer research funding, expanded access to quality affordable health care, and advanced proven tobacco control measures. We stand with our volunteers, working to make cancer a top priority for policymakers in cities, states and our nation’s capital. Join the fight by visiting www.fightcancer.org.