[Ip-health] UACT Letter to HELP Committee re health care bill and impact on cancer patients

Manon Ress manon.ress at cancerunion.org
Fri Jun 16 11:15:26 PDT 2017

June 16, 2017

Dear Chairman Senator Lamar Alexander and Ranking Member Senator Patty
Murray of the U.S. Senate Health, Education, Labor and Pensions (HELP)

The Union for Affordable Cancer Treatment (UACT) is a non-profit cancer
patient group. We are a union of people affected by cancer, their family
members and friends, people who take care of people with cancer, health
care professionals and cancer researchers committed to increasing access to
effective cancer treatment and care. We are particularly concerned about
the rapidly escalating cost of cancer medication and seek to fight for
cancer treatment and care to be affordable and available. More information
about the group is available on https://uact.org.

We urge you to hold public hearings on how the proposed Senate bill that
will end or modify the Affordable Care Act will affect cancer patients
(particularly persons with pre-existing conditions) and to ensure that
there are sufficient mechanisms to curb excessive prices for drugs and
other health technologies, and to protect cancer patients from medically
unnecessary restrictions on access to new anticancer drugs, diagnostic
tools and treatments.

UACT is especially concerned that there will be gaps in insurance and/or
medical needs covered for millions of cancer patients. We are asking the
Committee to hear testimony on the extent of those gaps, and to consider
changes that would improve coverage.

The nonpartisan Congressional Budget Office (CBO), estimated in May 2017
that the House of Representatives' version of a health-care reform bill,
the American Health Care Act (AHCA) H.R. 1628, would lead to millions more
Americans lacking health insurance by 2026:

CBO and JCT estimate that, in 2018, 14 million more people would be
uninsured under H.R. 1628 than under current law. The increase in the
number of uninsured people relative to the number projected under current
law would reach 19 million in 2020 and 23 million in 2026. In 2026, an
estimated 51 million people under age 65 would be uninsured, compared with
28 million who would lack insurance that year under current law. Under the
legislation, a few million of those people would use tax credits to
purchase policies that would not cover major medical risks.

It is essential to determine and to discuss the possible gaps in the Senate
bill before any vote.

Cancer is certainly a “major medical risk” and American cancer patients,
their families and caregivers deserve more consideration and respect from
the US Senate HELP Committee.

The information reported by the news media about the Senate bill has been
limited due to the extreme secrecy of the process. We assume that as usual,
special interests are well informed as regards the text of the proposals,
but the general public has been treated with surprising contempt. This
secrecy is an insult to persons who depend upon well functioning insurance
markets the most. Persons living with cancer or other pre-existing
conditions require treatments that are expensive and unaffordable without
adequate risk sharing. We want to know who will be covered, and if policies
will be good enough to adequately cover the essential health care benefits
patients need.

We recognize that it is important to control the costs of health care. In
this regard, we urge the Senate to ensure there are sufficient mechanisms
to curb excessive prices for drugs and other health technologies. This
should include more robust authority to grant compulsory licenses on drug
patents and to end non-patent exclusivities such as the Orphan Drug
exclusivity, when prices are excessive. In short, where prices are
unreasonable, we want the Senate to put the monopoly at risk, rather than

UACT also urges the Congress to consider broader long term reforms that
involve the delinking of R&D costs (and incentives to invest) from drug
prices. This can start with studies of the feasibility of ending legal
monopolies on drugs, and replacing the incentive that such monopolies
provide with alternative rewards or funding mechanisms, including but not
limited to large market entry rewards, expanded subsidies for or public
funding of clinical trials, and mechanisms such as the open source dividend
to enhance access to knowledge, materials, data and technologies that
benefit upstream innovation.

Thank you,


Dr. Manon Ress (stage 4 cancer patient)

Acting Director, UACT

UACT <https://twitter.com/Cancer_Union>@Cancer_Union
+1 571 331 6879

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