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Rep. Blumenauer Highlights ALS Patient Experience in House Hearing on Telehealth

Last week, the House Ways and Means Health Subcommittee held a hearing that focused on the use of Telehealth during the COVID-19 pandemic and the potential benefits of its continued use. Congressman Earl Blumenauer (OR-03) lifted the unique experiences of ALS patients seeking care as the healthcare system rapidly enhanced its use of virtual services.  

“Telehealth has been a lifeline for many [individuals with ALS and their families]. It can take hours of effort and caregiving support for a person with progressive ALS to be able to attend a live medical appointment,” said Representative Blumenauer.  

Representative Blumenauer also highlighted his role as a champion of The Patient Choice and Quality Care Act of 2017 (PCQCA), which was introduced in the 115th Congress and would expand services for individuals and families facing serious illness. Representative Blumenauer plans to reintroduce this bill in the current session of Congress.  

“I champion the Patient Choice and Quality Care Act, which would create a demonstration project to allow providers to leverage telehealth, to provide quality coordinated care for Medicare beneficiaries with a serious illness. This model focuses on providing high value care, rather than just paying for volume,” he explained.  

Dr. Ateev Mehrotra, MD, MPH, Associate Professor of Health Care Policy at Harvard Medical School, responded to the Congressman’s question regarding whether the use of Alternative Payment Models is recommended when providing care to select populations, such as those living with ALS.  

“They would [benefit], because it would allow them to gain flexibility and, with how difficult it is for them to go see their providers, having that flexibility would be very important. That would come from one of those Alternative Payment Models” said, Dr. Mehrotra.  

The dialogue sparked during the hearing highlights the aligned goals and objectives of C-TAC and the current Congress, as they pertain to serious illness care. C-TAC has developed two proposals to make permanent telehealth-enabled Medicare advance care planning (ACP) flexibilities that are currently in place during the pandemic. 

  • Remove the geographic originating site requirement for Medicare Advance Care Planning (ACP) delivered via telehealth and add the patient’s home as an eligible originating site. 
  • Allow for Medicare reimbursement and coverage of Medicare ACP services delivered via audio-only telehealth (i.e., via traditional phone). 

C-TAC applauds Representative Blumenauer’s dedication to lifting the experiences and needs of those living with serious illness. We look forward to our continued legislative partnership on PCQCA and efforts to ensure a strong future for telehealth’s role in serious illness care. 

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