2017 ASH Advocacy Efforts to Ensure Patient Access to Care
Published on: November 29, 2017
to Repeal and Replace the Affordable Care Act (ACA)
was very vocal on Congress’s repeated attempts to repeal and replace the
Affordable Care Act (ACA). ASH opposed
the legislation introduced in the House, the American Health Care Act, and the
Senate, the Better Care Reconciliation Act, and the Graham-Cassidy Amendment,
because of concerns that these pieces of legislation would reduce overall
access to coverage and treatment and would negatively impact patients with
hematologic diseases and disorders. ASH
sent numerous letters to Congress outlining the Society’s priorities and
expressing concerns with specific provisions of each of these pieces of
Senate released new legislation in October, the Bipartisan Health Care
Stabilization Act. ASH supports this proposed
legislation as it will improve patient access to care by funding the
cost-sharing reduction payments through 2019 and re-funding the education and
outreach efforts to help boost enrollment in the marketplaces.
oral and patient-administered forms of chemotherapy have become more prevalent
and represent the standard of care for many types of cancers for their
convenience, efficacy, and low rate of side effects, they are covered
differently than IV drugs, leaving many patients responsible for unsustainable
high monthly co-payments.
- Federal Legislation. As part of the Patients
Equal Access Coalition (PEAC),
ASH has advocated for legislation to ensure that cancer patients have equality
of access (and equality of insurance coverage) to all approved anticancer
regimens including, but not limited to oral and intravenous drugs. In early March, Representatives Leonard Lance
(R-NJ) and Brian Higgins (D-NY) reintroduced the Cancer Drug Parity Act (H.R. 1409), which currently has 114 bipartisan
cosponsors. Senator Al Franken (D-MN)
remains committed to reintroducing a companion bill in the Senate and is
currently seeking a Republican Senator to lead the effort with him. (Senator Mark Kirk from Illinois had been the
bill’s lead Republican sponsor in the past two congresses; however, he lost his
reelection bid in November and did not return to the Senate for the 115th
Legislation. Although only federal legislation will ensure coverage for all cancer
patients, 43 states plus the District of Columbia have passed legislation
to limit patient out-of-pocket costs for oral anti-cancer
medications. ASH has supported
legislative efforts at the state level and will continue to work with
stakeholders and advocacy groups to support ongoing legislative efforts in
a number of additional states, including Michigan, Tennessee, and North
- Michigan: As with efforts in other states, ASH
continues to work as part of a larger coalition of patient and provider
organizations to seek passage of oral parity legislation in Michigan. Legislation was
reintroduced in June 2017, marking the fourth attempt to pass oral chemotherapy
legislation in Michigan. In October, the
bill passed the Senate by a vote of 36-1. However, the legislation must still pass the
House, where it faces substantial hurdles.
ASH will continue to work with coalition partners to pass the bill and
have it signed into law in Michigan.
- Tennessee: Legislation was reintroduced in the Tennessee General
Assembly in early February to institute insurance coverage parity for oral
chemotherapy agents. The bill
successfully passed the House Insurance Subcommittee in mid-March and was
scheduled to be considered by the full House Insurance & Banking Committee
in April. However, facing opposition in
the Senate, the bill’s sponsor pulled the bill from further consideration. The Tennessee coalition is currently working
to develop a strategy to pass the legislation in 2018.
Carolina: Legislation passed the House in April 2017 by a vote
of 90-22 and has since been sent to the Senate for consideration, where
movement has stalled. The legislative
session for 2017 in North Carolina has technically ended; however, due to a
court order requiring the state legislature to redraw district lines, both
chambers have been convening periodic special sessions. The North Carolina coalition
is urging the Senate to consider the legislation in the next special session
that will begin in January 2018.
Oral parity legislation was introduced in the Arkansas House in
mid-February and very quickly passed through the full House. The legislation cleared the state Senate in
mid-March and was signed into law by Governor Asa Hutchinson at the end of March,
making Arkansas the 43rd state to pass oral parity legislation.
Prescription Drug SpecialtyTiers
insurance companies have divided prescription medications and treatments into
"tiers," generally based on cost. For drugs in Tiers 1, 2, and 3, most
health plans charge fixed co-pays, such as $10, $25 and $50, respectively. But increasingly, insurers are moving certain
drugs into a "specialty tier" (Tier 4 or Tier 5). Instead of a copay for specialty tier drugs,
patients are responsible for coinsurance, meaning they pay a percentage of the
actual cost of the drug – sometimes as much as 25 percent or even 50 percent.
part of the Coalition for Accessible Treatments, ASH has advocated for
legislation in the U.S. House of Representatives (H.R. 2999, the Patients' Access to Treatment Act)
that would significantly limit how much consumers pay for drugs in Tier 4 or
above (including biologics and other drugs for diseases and conditions such as
cancer and anemia) by requiring a fixed co-pay for specialty tier drugs that is
in line with Tier 3 drugs. The
legislation, reintroduced in the 115thCongress in June by
Representatives David McKinley (R-WV) and G.K. Butterfield (D-NC), would end
the practice of "discriminating between medications" by requiring a
fixed co-pay for specialty tier drugs that is in line with Tier 3 drugs. Representatives McKinley and Butterfield,
along with ASH and other organizations in the Coalition for Accessible
Treatments, are also working to find a champion to introduce companion
legislation in the Senate.
February, the ASH Officers’ presented Representative McKinley with the 2016 ASH
Public Service Award to thank him for his commitment to ensuring that patients have
access to the treatments and cures through his sponsorship of this legislation.
Work With the Food and Drug Administration (FDA)
2017, ASH continued to partner with the U.S. Food and Drug Administration (FDA)
to offer the following educational programs:
- The ASH-FDA
Speaker Series, a program where ASH brings experts to the FDA to educate
their staff on important topics in hematology, continued to be well received. The most recent program focused on epigenetic
therapies, with insights from studies in myeloid malignancies, presented by
Ross Levine, MD (Memorial Sloan Kettering).
and FDA are co-sponsoring two programs at the ASH Annual Meeting that will
feature drugs recently approved to treat hematologic disorders. FDA
product-reviewers will discuss the safety and efficacy issues from the
products' clinical trials and toxicity studies. The programs will also include
clinicians who will discuss their perspectives on the use of the products in
the real-world setting.
The FDA will also host a patient advocate
session at the ASH Annual Meeting to encourage dialogue between FDA leadership
and reviewers and patient advocates.
served as one of the supporting organizations for FDA’s Oncology Center of
Excellence’s first annual Partners in Progress: Cancer Patient Advocates and FDA meeting. The goal of the meeting was to provide patient
advocates with training on the role of the FDA and cancer patient advocates in
oncology product development.
ASH Strengthens Drug Access Resources
continues to enhance the content on the Society’s drug resource webpage, which includes resources to help clinicians and patients
access high-cost hematologic drugs, information about hematologic drug
shortages, FDA alerts about newly approved therapies and updated safety
information, and hematology-related Risk Evaluation and Mitigation Strategies.
will present a new biosimilars webcourse series in late November through early
December entitled Biosimilars: A New Era of Hematology/Oncology Management
Considerations. The two-part series will present
practical, foundational information on biosimilars, while also addressing
issues and barriers most commonly encountered in the clinical setting.
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