On this episode of the podcast, Terry interviews Rep. Fred Upton (R-MI) about the latest developments with the 21st Century Cures Act, also known as Cures 2.0, which Terry and Bob also discussed in Episode 16 of the podcast. 

In 2016, Rep. Upton partnered Rep. Diana DeGette (D-CO) to pass bipartisan legislation known as the Cures Act that speeds medical discoveries, cuts regulatory barriers, and increases funding for breakthrough treatments. Now they’re teaming up again to help improve the delivery of and access to these treatments. Whereas the original Cures Act focused on the discovery of new cures, Cures 2.0 identifies ways to modernize the delivery of these treatments to patients.

Rep. Upton explains how he is still moving full-steam ahead trying to pass Cures 2.0, but that Covid-19 legislation is taking up most of the attention of his fellow legislators. He is hopeful that parts of the legislation can get included in the forthcoming Phase 4 Covid-19 relief package that Congress is currently working on because his legislation has provisions that would directly help improve the Covid-19 response. However, he’s realistic that most of the legislation will probably be punted to 2021. Given that this is truly bipartisan legislation, the congressman is confident that it will pass. 

Cures 2.0 addresses six key areas that are vital to the patient advocate community: 

  1. Public Health and Pandemic Preparedness: The Covid-19 pandemic has demonstrated that the country was woefully unprepared to respond to a public health threat of this magnitude. Cures 2.0 would improve pandemic surveillance and testing, so the country can better recover from this health crisis and better prepare for the next one. It also would establish a COVID-19 Rare Disease Support Program, which would help those disproportionately threatened by the disease, as well as form a federal grant program to help patients and their families cover Covid-19 costs. 
  2. Caregiver Integration: Too often, caregivers face hurdles advocating for their family members, with access to patient medical records being a key hurdle. Cures 2.0 would advance steps to educate caregivers on how to navigate the complex health system and ensure that they complement, not compete with, clinicians. 
  3. Patient Engagement in Healthcare Decision Making: Patients often have their own difficulties navigating the healthcare system and being their own best advocates. Cures 2.0 would improve health literacy and make it easier to access patient medical records in one place. A medical visit can be stressful enough without having to chase down different records from different providers in different locations. This provision would help patients engage in and advocate for their treatment decisions. 
  4. Diversity in Clinical Trials: Clinical trials rarely reflect the diversity of the country, putting minorities at a disadvantage in access to cutting edge care. Cures 2.0 would expand diversity in clinical trials to ensure that new medical products and medications are safe and effective for all patients. 
  5. Food and Drug Administration Modernization: As discussed in last week’s podcast, artificial intelligence holds immense promise to improve the delivery of care. Unfortunately, the FDA poses a major hurdle to modernization because of its calcified bureaucracy. Cures 2.0 would enable the FDA to provide grants to innovative and generate patient-centric drug developments and clinical trials, including using real-world data (RWD) and real-world evidence (RWE).
  6. CMS Modernization: More broadly, U.S healthcare delivery hasn’t entered the 21st century in many respects. Where else do you still have to use a fax machine and fill out forms with a pen and clipboard?! Cures 2.0 will include scientific and technological provisions to bring U.S. healthcare into the smartphone age.  

Patient correspondent Kate Pecora also interviews Lori Long, who faces losing her disability benefits if she marries her fiancé. Lori, who has a debilitating autoimmune disease, tells her story about how her Social Security and Disability Insurance (SSDI) benefits are threatened by getting married to an able-bodied person. This is an issue of marriage equality, explains Lori; disabled people should have the same right to marry as anyone else. She highlights her progress on getting this civil rights issue addressed through pending legislation dubbed Lori’s law.

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