Letter to Representatives DeGette & Upton on the “Cures 2.0” Initiative

December 16, 2019

Dear Representative DeGette and Representative Upton:

The National Health Council (NHC) appreciates this opportunity to provide feedback on your work to help advance medical research and foster medical innovations in a “Cures 2.0” initiative.  The progress that has been achieved because of the 21st Century Cures Act has been remarkable, and we look forward to working with you on this next stage.

Founded in 1920, the NHC is the only organization that brings together all segments of the health community to provide a united voice for the more than 160 million people with chronic diseases and disabilities and their family caregivers. Made up of more than 140 diverse, national health-related organizations and businesses, the NHC’s core membership includes the nation’s leading patient advocacy organizations, which control its governance and policy-making process. Other members include professional and membership associations; nonprofit organizations with an interest in health; representatives from the pharmaceutical, generic drug, health insurance, device, and biotechnology industries; and research, provider, and family caregiving organizations.

The NHC is committed to ensuring patients have access to affordable, sustainable, high-value treatments. Your call to action focusing on digital health, modernizing coverage for new cures and medical products, harnessing data to empower patients, and focusing on families and caregivers highlights four areas that are key to achieving this goal. We support those areas of focus and look forward to working with you to develop legislation to address these critical issues.

Specifically, we would like to see a focus on assuring the patient voice is included in coverage decisions for new and innovative therapies and for the use of digital health tools. The NHC identified Domains and Values that are key to Increasing Meaningful Access to Affordable, Sustainable, and High-Value Health Care. We urge you to use these Domains and Values as a guidepost for Cures 2.0.

In addition, the NHC has begun to explore with our partners the concept of personalized health.  Personalized health is an approach that leverages all existing patient data to individualize care, remove barriers to access, and lower overall costs. Over the last decade, we have seen an explosion in the numbers of people diagnosed with one or more chronic condition. This growing burden of disease, combined with escalating treatment costs, are creating significant pressure on patients and the health care system. We must better understand the combined impact and interrelationships between the various determinants of health – biologic, social, economic, and environment. Artificial intelligence and machine learning can turn clinical and real-world data about a patient’s biology, comorbid conditions, personal circumstances, goals, and other “life” factors into valuable insights. Those insights can inform how we personalize health care for complex, high-cost patients. Over the coming year, we will be convening key thought leaders from the patient, payer, biopharmaceutical, device, and health technology sectors to identify barriers to personalized health and craft policy solutions. The goal is to improve quality, achieve better outcomes, increase patient satisfaction, enhance efficiency and reduce costs. Based on the parameters of your call to action, we feel our ultimate vision of personalized health is greatly aligned with your vision of Cures 2.0.

Finally, the NHC fully supports the proposal to provide needed supports to families and caregivers. According to a 2017 AARP study, about 41 million family caregivers in the U.S. provided an estimated 34 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion.  The more information, education and community resources a family or caregiver can access, the more likely they are at being successful in their very important role without being overwhelmed or burnt out and the better the outcome will be for the patient.

The NHC welcomes the opportunity to work with Congress to design Cures 2.0. We greatly appreciated the tireless effort you and your staff devoted to the passage of the 21st Century Cures Act. Just as with that process, please consider us and our members as partners in Cures 2.0.

Sincerely,

Marc Boutin, J.D.

Chief Executive Officer

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