The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 (; ) is a United States public law that amends the Public Health Service Act to revise the muscular dystrophy research program of the

National Institutes of Health The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late ...

(NIH). The bill was introduced into the

United States House of Representatives The United States House of Representatives, often referred to as the House of Representatives, the U.S. House, or simply the House, is the lower chamber of the United States Congress, with the Senate being the upper chamber. Together they ...

during the

113th United States Congress The 113th United States Congress was a meeting of the legislative branch of the United States federal government, from January 3, 2013, to January 3, 2015, during the fifth and sixth years of Barack Obama's presidency. It was composed of the ...

Background

The Muscular Dystrophy Community Assistance Research and Education Amendments of 2001 ("MD CARE Act", ) amended the Public Health Service Act to provide for research with respect to various forms of muscular dystrophy, including Duchenne,

Becker Becker () is one of the German-language surnames, along with Bäcker and Baecker, that derive from the root, which refers to baking. The surname began as a name for a baker (and thus his family). In northern Germany it can also derive from the ...

, limb girdle, congenital, facioscapulohumeral, myotonic, oculopharyngeal, distal, and Emery–Dreifuss muscular dystrophies.H.R. 717--107th Congress (2001)
MD-CARE Act, GovTrack.us (database of federal legislation), (accessed July 29, 2007)Public Law 107-84
, PDF as retrieved from

NIH The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late ...

website According to the Muscular Dystrophy Association, "since 2001, there have been 67 clinical trials of drugs or therapies for muscular dystrophy, and currently 37 clinical trials are under way."

Provisions of the bill

''This summary is based largely on the summary provided by the

Congressional Research Service The Congressional Research Service (CRS) is a public policy research institute of the United States Congress. Operating within the Library of Congress, it works primarily and directly for members of Congress and their committees and staff on a ...

, a

public domain The public domain (PD) consists of all the creative work to which no exclusive intellectual property rights apply. Those rights may have expired, been forfeited, expressly waived, or may be inapplicable. Because those rights have expired, ...

source.'' The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 would amend the Public Health Service Act to revise the muscular dystrophy research program of the

(NIH). The bill would expand the range of forms of muscular dystrophy included within the program. Requires the research conducted through

Paul D. Wellstone Paul David Wellstone (July 21, 1944 – October 25, 2002) was an American academic, author, and politician who represented Minnesota in the United States Senate from 1991 until he was killed in a plane crash near Eveleth, Minnesota, in 2002. A m ...

Muscular Dystrophy Cooperative Research Centers to include cardiac and pulmonary function research. Requires the Director of NIH to ensure the sharing of data between such centers. The bill would revise the composition of the Muscular Dystrophy Coordinating Committee (MDCC) to include the

Social Security Administration The United States Social Security Administration (SSA) is an independent agency of the U.S. federal government that administers Social Security, a social insurance program consisting of retirement, disability and survivor benefits. To qualify ...

and the United States Administration for Community Living. The bill would require the MDCC to meet at least two times per year. Requires the MDCC Action Plan to provide for: (1) health economic studies to demonstrate the cost-effectiveness of providing independent living resources and support to patients with various forms of muscular dystrophy, (2) studies to determine optimal clinical care interventions for adults with various forms of muscular dystrophy, and (3) the development of clinical interventions to improve the health of adults with various forms of muscular dystrophy. The bill would require the MDCC to develop a plan to expedite the evaluation and approval of emerging therapies and personalized medicines that have the potential to decrease fatal disease progression across the various forms of muscular dystrophy. The bill would require the

United States Secretary of Health and Human Services The United States secretary of health and human services is the head of the United States Department of Health and Human Services, and serves as the principal advisor to the president of the United States on all health matters. The secretary is ...

(HHS), in carrying out

epidemiological Epidemiology is the study and analysis of the distribution (who, when, and where), patterns and determinants of health and disease conditions in a defined population. It is a cornerstone of public health, and shapes policy decisions and evidenc ...

activities regarding Duchenne and other forms of muscular dystrophies, to ensure that data from different racial and ethnic populations is captured and made publicly available to investigators conducting public or private research on muscular dystrophy. Directs the Secretary to foster ongoing engagement and collaboration between the surveillance program and the research centers. The bill would amend the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 to authorize the Secretary to: (1) update and disseminate widely existing Duchenne-Becker muscular dystrophy care considerations for pediatric patients, and (2) develop and disseminate widely Duchenne-Becker muscular dystrophy considerations for adult patients and acute care considerations for all muscular dystrophy populations. Directs that such care considerations should build upon existing efforts currently underway for specified forms of muscular dystrophy and incorporate strategies specifically responding to the findings of the national transitions survey of minority, young adult, and adult communities of muscular dystrophy patients.

Congressional Budget Office report

''This summary is based largely on the summary provided by the

Congressional Budget Office The Congressional Budget Office (CBO) is a List of United States federal agencies, federal agency within the United States Congress, legislative branch of the United States government that provides budget and economic information to Congress. Ins ...

, as ordered reported by the House Committee on Energy and Commerce on July 15, 2014. This is a

source.'' H.R. 594 would amend the Public Health Service Act to reauthorize surveillance, research, and education activities relating to muscular dystrophy. The bill would expand the portfolios of the National Institutes of Health (NIH) and the

Centers for Disease Control and Prevention The Centers for Disease Control and Prevention (CDC) is the national public health agency of the United States. It is a United States federal agency, under the Department of Health and Human Services, and is headquartered in Atlanta, Georgi ...

(CDC) to include additional forms of muscular dystrophy. It also would direct CDC to capture more representative data regarding muscular dystrophy across populations. The

(CBO) estimates that implementing H.R. 594 would cost $323 million over the 2015-2019 period, assuming appropriation of the necessary amounts.

Pay-as-you-go Pay as you go or PAYG may refer to: Finance * Pay-as-you-go tax, or pay-as-you-earn tax * Pay-as-you-go pension plan * PAYGO, the practice in the US of financing expenditures with current funds rather than borrowing * PAUG, a structured financia ...

procedures do not apply to this legislation because it would not affect direct spending or revenues. H.R. 594 contains no intergovernmental and private-sector mandates as defined in the

Unfunded Mandates Reform Act The Unfunded Mandates Reform Act of 1995 (UMRA''(pdf)https://www.govinfo.gov/content/pkg/USCODE-1995-title2/html/USCODE-1995-title2-chap25.htm (text)] restricts the federal government of the United States, federal imposition of unfunded mandates on ...

Procedural history

The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 was introduced into the

on February 8, 2013, by Michael C. Burgess, Rep. Michael C. Burgess (R, TX-26). The bill was referred to the

United States House Committee on Energy and Commerce The Committee on Energy and Commerce is one of the oldest standing committees of the United States House of Representatives. Established in 1795, it has operated continuously—with various name changes and jurisdictional changes—for more tha ...

and the

United States House Energy Subcommittee on Health The U.S. House Committee on Energy and Commerce Subcommittee on Health is a subcommittee within the Committee on Energy and Commerce A committee or commission is a body of one or more persons subordinate to a deliberative assembly. A committee ...

. On July 24, 2014, the bill was reported (amended) alongsid
House Report 113-556
On July 28, 2014, the House passed the bill in a

voice vote In parliamentary procedure, a voice vote (from the Latin ''viva voce'', meaning "live voice") or acclamation is a voting method in deliberative assemblies (such as legislatures) in which a group vote is taken on a topic or motion by responding vo ...

. The

United States Senate The United States Senate is the upper chamber of the United States Congress, with the House of Representatives being the lower chamber. Together they compose the national bicameral legislature of the United States. The composition and pow ...

voted on September 26, 2014, to pass the bill with

unanimous consent In parliamentary procedure, unanimous consent, also known as general consent, or in the case of the parliaments under the Westminster system, leave of the house (or leave of the senate), is a situation in which no member present objects to a prop ...

. On September 26, 2014, President

Barack Obama Barack Hussein Obama II ( ; born August 4, 1961) is an American politician who served as the 44th president of the United States from 2009 to 2017. A member of the Democratic Party, Obama was the first African-American president of the ...

signed the bill into law and it became .

Debate and discussion

The Parent Project Muscular Dystrophy supported the bill, urging supporters to take action to help them pass the bill. According to the organization, the bill would "update the landmark MD-CARE Act law that has done so much over the past 13 years to extend and improve life for those impacted by Duchenne and other forms of Muscular Dystrophy and to spur breakthroughs in research that we believe are getting us closer to effective therapies and treatments." The

Muscular Dystrophy Association The Muscular Dystrophy Association (MDA) is an American 501(c)(3) umbrella organization that works to support people with neuromuscular diseases. Founded in 1950 by Paul Cohen, who lived with muscular dystrophy, it works to combat neuromuscular d ...

supported the bill, listing the accomplishments since the first law was enacted, but arguing that "a great deal of work still needs to be done, and increased federal support is needed to ensure that researchers can continue making progress toward finding a cure."

References

External links

Library of Congress - Thomas H.R. 594beta.congress.gov H.R. 594GovTrack.us H.R. 594OpenCongress.org H.R. 594Congressional Budget Office's report on H.R. 594House Report 113-556 on H.R. 594
{{DEFAULTSORT:Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 (H.R. 594 113th Congress) United States federal health legislation Acts of the 113th United States Congress Muscular dystrophy