Analysis Finds Excluding Brand Name Drugs Approved to Treat Rare Diseases from
Solutions to Lower Prices a “Missed Opportunity to Help Patients”





 



DOSE OF REALITY: STUDY FURTHER HIGHLIGHTS THE COST OF BIG PHARMA’S BLOCKBUSTER
BAILOUT

Analysis Finds Excluding Brand Name Drugs Approved to Treat Rare Diseases from
Solutions to Lower Prices a “Missed Opportunity to Help Patients”



A recent analysis
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published in The American Journal of Managed Care (AJMC) highlights the
outsized impact brand name prescription drugs approved to treat rare diseases
under the Orphan Drug Act have on prescription drug spending — and how
exempting certain blockbuster brand name drugs approved to treat rare diseases
from solutions to lower prescription drug prices, “substantially limits
potential savings for patients and the health care system.”



Earlier this year, Congress passed a Big Pharma-backed policy without the
right information from the Congressional Budget Office (CBO) on which brand
name drugs would be impacted – or its true cost to the American people – that
exempted certain medications approved for rare disease status from solutions to
lower drug prices. CBO previously estimated that this pharma-backed policy, The
Optimizing Research Progress Hope And New (ORPHAN) Cures Act, would cost
seniors and taxpayers $4.9 billion in higher prescription drug spending.A
revised estimate
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from CBO projects the ORPHAN Cures Act will cost $8.8 billion between 2025 and
2034, by exempting blockbuster drugs like Merck’s Keytruda from solutions to
lower drug prices.



The new analysis in AJMC “measured public and private US spending on
high-revenue drugs targeting rare diseases in 2022,” and found that “19 of the
100 prescription drugs with the highest annual net sales in 2022 were solely
approved to treat rare diseases,” meaning “[a]pproximately 1 in 5 of the
highest-revenue prescription drugs in the US in 2022 was approved to treat only
rare conditions.”



The analysis also notes that while “[t]he increase in drugs approved to treat
rare conditions has been heralded as a success…in recent years, the necessity
of Orphan Drug Act incentives has been questioned due to the high prices and
substantial revenues associated with treatments for many rare diseases.” As the
analysis notes, “[a]verage launch prices for new drugs with Orphan Drug Act
designations are 7 times higher than prices for nonorphan drugs [and] [s]everal
gene therapies approved to treat rare conditions, including spinal muscular
atrophy, have been priced at well over $1 million.”



The study concludes “excluding these drugs from [policies meant to lower
prescription drug prices] is a missed opportunity to help patients struggling
with high prescription drug costs because these drugs account for a sizeable
share of US pharmaceutical spending.”



In addition to the recent AJMC analysis, several other studies have noted the
outsized impact rare disease drugs have on U.S. prescription drug spending –
and the impact policies such as the ORPHAN Cures Act will have on U.S.
patients, taxpayers and the health care system.



Key Facts on the ORPHAN Cures Act

* The CBO’s updated analysis estimates that the ORPHAN Cures Act will cost
$8.8 billion between 2025 and 2034, up from its original estimate of $4.9
billion.
* CBO’s analysis now includes several blockbuster drugs, including Johnson &
Johnson’s cancer drug Darzalex, Merck’s blockbuster cancer drug Keytruda and
Bristol-Myers Squibb’s cancer drug Opdivo.
* The Wall Street Journal
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first reported that the CBO originally estimated the pharma-backed policy
would cost seniors and taxpayers $4.9 billion in higher prescription drug
spending, but “[t]he true tally of the new provisions could be far higher
because CBO missed certain drugs such as Keytruda.”
* An analysis
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published in Health Affairs in August by Jennifer C. Chen and Anna Kaltenboeck
of Verdant Research stated there are at least 10 brand name drugs that could be
impacted by the recently passed Big Pharma-backed provision, and gross Medicare
spending on these drugs in 2023 amounted to $13.8 billion, and nine of the 10
drugs that could be impacted are for certain forms of cancer.
* A second analysis
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in Health Affairs, also published in August by researchers associated with the
University of Washington’s School of Pharmacy, identified at least 13 brand
name drugs that could be impacted by the ORPHAN Cures Act. These 13 drugs,
between Medicare Part B and Medicare Part D, had a projected gross spending of
more than $33 billion in 2024.
* The Kaiser Family Foundation (KFF) released an analysis
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and found at least 18 brand name drugs that could be impacted by the
provision. These 18 drugs combined for $17.5 billion in Medicare spending in
2023.
As the full impact of the Big Pharma bailout for high-priced blockbuster drugs
comes to light, Congress should act to protect seniors and taxpayers from
billions of dollars in higher prescription drug prices.



Read the full analysis from the American Journal of Managed Care HERE
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.



Read more on the ORPHAN Cures Act HERE
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.



Read more on bipartisan, market-based solutions to hold Big Pharma accountable
HERE <[link removed]>.



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