WASHINGTON, Aug. 12,
2022 /PRNewswire/ -- Following the passage of the
Inflation Reduction Act, Peter L.
Saltonstall, President and CEO, the National
Organization for Rare Disorders (NORD), issued the following
statement:
"The Inflation Reduction Act is a significant step forward in
helping ensure that individuals and families with rare diseases
have access to the comprehensive health care they need to survive
and thrive.
The extension of enhanced Advanced Premium Tax Credits for three
years will keep quality health insurance accessible to millions of
Americans, and the creation of an annual out-of-pocket cap on
prescription drug costs for Medicare beneficiaries will provide a
vital protection to patients who struggle to afford their
medications.
NORD is pleased to see that Congress did not include damaging
changes to the Orphan Drug Tax Credit (ODTC) within the
Inflation Reduction Act. We advocated tirelessly on behalf
of the over 25 million Americans with a rare disease to preserve
this critical incentive when significant changes to the ODTC were
considered by Congress last fall. We are grateful the current 25%
tax credit for clinical trial testing services remains unchanged
and believe it is a critical tool to help foster robust rare
disease drug development. We applaud the federal commitment shown
to ensure access to safe and effective treatment for rare disease
populations is maintained, and future research efforts for new
therapies are incentivized by protecting the ODTC.
While this bill includes provisions important to individuals and
families facing rare diseases, the work of our leaders on Capitol
Hill is not done. NORD has elevated rare community voices for
generations, and we will continue to work closely with lawmakers in
Congress and the Biden Administration on the implementation of this
legislation and on future efforts to improve the lives of people
living with rare disorders."
To learn more about NORD's policy work,
visit: http://bit.ly/Policy-Issues.
About the National Organization for Rare Disorders
(NORD)
The National Organization for Rare Disorders (NORD) is the
leading independent advocacy organization representing all patients
and families affected by rare diseases in the United States. NORD began as a small group of
patient advocates that formed a coalition to unify and mobilize
support to pass the Orphan Drug Act of 1983. Since then, the
organization has led the way in voicing the needs of the rare
disease community, driving supportive policies, furthering
education, advancing medical research, and providing patient and
family services for those who need them most. Together with over
330 disease-specific member organizations, more than 17,000 Rare
Action Network advocates across all 50 states, and national and
global partners, NORD delivers on its mission to improve the lives
of those impacted by rare diseases.
Visit rarediseases.org.
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SOURCE National Organization for Rare Disorders (NORD)