In comments sent on March 23, 2021 to the Organ Procurement and Transplantation Network, NASPGHAN voiced opposition to a proposal to rank non-exception liver transplantation candidates ahead of the exception candidates when they have the same model for end-stage liver disease (MELD) or pediatric end-stage liver disease (PELD) score and blood type compatibility with the donor.
In its letter, NASPGHAN argued the proposed changes could substantially disadvantage children by decreasing their access to timely organ offers and transplantation. Specifically, NASPGHAN pointed out a calculated PELD/MELD score significantly underestimates waitlist mortality for children awaiting liver transplant, and more than 40 percent of children listed for liver transplant require MELD/PELD exception scores to appropriately reflect their risk, and to access transplant.
On February 3, 2021, NASPGHAN announced in an all-member email that UnitedHealthcare (UHC) had agreed to modify its new policy to remove Remicade as a preferred product. UHC amended its policy at the request of NASPGHAN, AGA, ACG and ASGE — a testament to the power of collaboration and advocacy.
UHC will now allow pediatric patients 16 years of age and younger and currently on Remicade to remain on Remicade if that is the recommendation of the treating physician.
Additionally, adult patients currently on induction of Remicade for less than 18 months and those having a flare of active disease will not be required to switch to Inflectra or Avsola, although obtaining one of these exceptions will require the prescribing provider to request a review for determination.
NASPGHAN understands prior authorization, step therapy, therapeutic switching and formulary restrictions are interfering with physician-patient decisions, delaying care and imposing significant administrative burden on physicians.
Over the past month, NASPGHAN has been surveying is members to understand what the Society’s top advocacy priorities should be over the next two years. Not surprisingly, access to care emerged as the top concern. Over the weeks and months ahead, the NASPGHAN Public Affairs and Advocacy Committee will engage in efforts and initiatives aimed to improve access to prescribed care, including addressing egregious cost-containment mechanisms used by insurance companies to deny, delay and restrict care.
On April 17, 2019 NASPGHAN, the American Academy of Pediatrics and consumer organizations sent a letter to the Consumer Product Safety Commission (CPSC) urging that it prioritize high-powered magnet sets for its Fiscal Year 2020 agenda.
In the letter, which was initiated by NASPGHAN, the organizations expressed concern that high-powered magnets have found their way back into the hands of children following decisions by the Tenth Circuit Court of Appeals and the Federal District Court of Colorado, which vacated the magnet sets rule and a recall order, respectively. The organizations asked the CPSC to re-issue the recall order for high-powered magnet sets and to work quickly to finalize a strong safety standard that addresses the court’s concerns. NASPGHAN is currently exploring various legislative avenues for ridding the market of high-powered magnet sets in absence of CPSC action.
On May 7, 2019 93 patients, caregivers and providers converged on Capitol Hill to advocate for medical nutrition equity for patients with gastrointestinal and metabolic diseases and disorders, marking the second time in as many years that stakeholders have come together under the umbrella of the Patients & Providers for Medical Nutrition Equity (PPMNE) Coalition to fight for better coverage of medical foods, formulas and vitamins.
Participants visited nearly 200 congressional offices asking lawmakers to co-sponsor the Medical Nutrition Equity Act. The legislation, first introduced in 2017, was reintroduced in the House on May 2 by Reps. Jim McGovern (D-MA) and Jaime Herrera Beutler (R-WA) with the original cosponsorship support of Reps. Brian Fitzpatrick (R-PA) and Joe Kennedy (D-MA). Similar to the original legislation, the bill (H.R. 2501) requires all payers — Medicaid, Medicare, Federal Employees Health Benefits Program, Children's Health Insurance Program and private insurance — to cover medical nutrition for certain gastrointestinal conditions and metabolic disorders.
Identical legislation in the Senate is pending reintroduction as efforts are underway to identify a Republican to co-lead the bill alongside Sen. Bob Casey (D-PA). Sen. Charles Grassley (R-IA) was the bill’s lead Republican in the 115th Congress, but because he has taken over the gavel of the Finance Committee, which has jurisdiction over the bill, he will not co-lead introduction this year.
PPMNE was formally launched by NASPGHAN in 2018 and now consists of 38 provider and patient organizations, including individual children’s hospitals. NASPGHAN asks its members to encourage their institutions to join the coalition. For more information about how to join, contact NASPGHAN’s policy consultant Camille Bonta at email@example.com.
Other ways that NASPGHAN members can get involved is by sending an email to their members of Congress asking for cosponsorship of the Medical Nutrition Equity Act. Taking action is easy and only takes a couple minutes through NASPGHAN’s Action Center.
NASPGHAN members can also help by submitting stories about their frustrations with medical nutrition denials and how it affects their patients. NASPGHAN members can also encourage their patients and families to submit stories. These stories can be easily submitted through an online portal on the PPMNE website. These stories are critical to advocacy efforts, and submissions for gastrointestinal disorders are currently lacking.