The Colorectal Cancer Alliance believes that every cancer patient is unique and that there must be an individualized cancer care plan with shared decision-making between the patient and the physician. Our position is consistent with standards developed by the Institute of Medicine in their report Delivering High Quality Cancer Care – Charting a Course for a System in Crisis. Some of the key elements in the standards include:
- The diagnosis including specific tissue information, relevant biomarkers, and stage.
- Treatment plan and duration including specific chemotherapy drug names, doses, and schedule as well as surgery and radiation therapy (if applicable).
- Expected response to treatment; treatment benefits and harm, including impact on quality of life.
- Estimated total and out-of-pocket costs for cancer treatment.
- Plan for addressing a patient’s psychosocial health needs including psychological, vocational, disability, legal, or financial concerns.
Unfortunately, even for those with access to a high-quality health system, many patients do not have an individualized cancer plan. This can result in under-diagnosis and under-treatment. Further, it fails to recognize and address how cancer impacts so many aspects of a patient's life, including work, family, and social aspects.
So why do patients not have an individualized care plan in a nation with high-quality cancer treatment? Here the adage “what gets paid for gets done” applies. Medicare covers most aspects of clinical treatment, but there is no reimbursement for the work necessary to develop an individualized cancer care plan. Without coverage, this important component of cancer care is simply not done.
The good news is that the Cancer Care Planning and Communication Act was introduced in the House of Representatives last month. This legislation would provide Medicare coverage for cancer care planning. Importantly, the legislation aligns what Medicare would pay for with the standards developed by the Institute of Medicine. The Alliance thanks Representative Mark DeSaulnier from California’s 10th District for introducing the bill.
Cancer is not a partisan issue and in less than a month, the Cancer Care Planning and Communications Act already has 11 co-sponsors from both parties. However, for this important legislation to move forward or to be included in the omnibus package, we need many more House members to sign on as co-sponsors.
The Alliance will advocate strongly for this bill, but we need your help. Please send a quick email to your Representative. It’s best if you let your member know why you personally feel patients should have an individualized care plan and should be involved in decisions regarding their cancer care. However, feel free to use the sample email below. Most members have a website, or to find your representative, click here.
I am writing to ask that you sign on as a co-sponsor of the Cancer Care Planning and Communication Act (HR 5183). Cancer care must be personalized to the individual patient and not a one-size-fits-all approach. This bi-partisan legislation would align Medicare coverage with the care standards developed by the Institute of Medicine.
The Colorectal Cancer Alliance is committed in 2024 to finally getting Congress to include colorectal cancer as a dedicated research program at the CDMRP.
Get to know Colorectal Cancer Alliance volunteer Nancy Pope and consider being a service to the community yourself.
Whether personally impacted by colorectal cancer (CRC), supporting a loved one, or dedicated to educating and empowering others, these downloadable and printable resources can help.