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In 2016, Congress passed and President Obama signed into law the 21st Century Cures Act, which invested $6.3 billion into cancer research, along with streamlining the FDA to get new treatments to patients faster. This important legislation helped to advance many of the new treatments that have become available.

As we approach the fifth anniversary of the Cures Act, legislators are planning an update. In May of 2020, U.S. Representatives Diana DeGette (D-CO) and Fred Upton (R-MI) drafted a concept paper as a starting point for developing bipartisan legislation known as “Cures 2.0.” The Alliance strongly supported this concept, and we were pleased to see that last month Representatives DeGette and Upton released a full draft of the legislation for comment.

The draft bill addresses a wide range of issues, but below we have summarized key components and, in particular, those areas most important for people with colorectal cancer and their families:

Title One of the legislation addresses the long-term health consequences of COVID-19 and seeks to prepare our nation to address future pandemics. Patients are reporting a variety of continuing health problems following recovery from COVID-19. Cures 2.0 would conduct a nationwide survey to assess these and determine sources of health, long-term care, and disability insurance coverage.

Including SARS and Ebola, we have endured five pandemics in the last 20 years, which demonstrates that the COVID-19 pandemic is not a once-in-a-generation event. Our nation will face future public health challenges, including mutations from COVID-19. Cures 2.0 will take important steps to help prepare us for future pandemics. 

The Alliance applauds Title Two, which addresses the vital role patients and caregivers play in improving health outcomes. It includes provisions for caregiver education, training, and improving health literacy for all stakeholders. Title Two addresses the vital role of clinical trials and seeks to increase participation, including better representation from minority communities. It also recognizes the importance of including patient experience in clinical trials data.

The first Cures Act sought to enhance the Food and Drug Administration (FDA), particularly in the development of digital health technologies. Title Three of Cures 2.0 expands efforts to modernize the FDA and accelerate the approval of novel therapies. Importantly it seeks to increase the use of Real World Data (RWD) at the FDA.

Title Four focuses on the Centers for Medicare and Medicaid Services (CMS). It incorporates elements from other legislation the Alliance supports and other important provisions, including:

  • Sec 403, which would expand access to Telehealth by permanently removing Medicare’s geographic restrictions that require a patient to live in a rural area; 
  • Sec 407, which would expand access to genetic testing; 
  • And Sec 408, which would create a pilot program to test approaches for delivering personalized medicine consultations.

Title Five recognizes the need for expanding investment in leading-edge biomedical research. Sec 501 creates the Advanced Research Projects Agency for Health designed to speed transformative innovation in health research. Sec 502 commits an additional $25 billion to independent research institutions.

The Alliance applauds Representatives DeGette and Upton for taking a bipartisan approach to continuing the progress that was made from the initial Cures Act. It has been almost five years and it is time to move to the next level. Keeping with the “Moon Shot” analogy used in the first Cures Act, remember that it was not the first Apollo mission that put us on the moon, but the 11th. 

We encourage you to send an email to your representative and indicate that it is time for Congress to take the next steps on the 21st Century Cures Act. Express your support for the modernization of both the FDA and CMS and the need to increase our investment in finding a cure for cancer. If you would like to review the full draft of Cures 2.0, click here.


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