Advocacy

ADVOCACY COALITION

We share common ground with numerous healthcare organizations on advocacy issues. View a list of the groups with which we collaborate.

ADVOCACY CORNER

In addition to issues at your state or local level, many activities at a national level affect you. Contact your U. S. Senator or Representative to voice concern and needs. Think of your local newspaper editor as a vehicle for keeping others around you informed and actively engaged. Here some important causes:

2012

• An NAFC council has finalized its recommendations for quality performance standards for disposable adult absorbent products.

2011

• Nancy Muller, PhD, executive director of NAFC, presented NAFC’s position statement, in regard to surgical placement of vaginal mesh for treatment of pelvic organ prolapse, at an open public hearing for Obstetrics and Gynecology Devices Panel of the Food and Drug Administration (FDA). Click here to read NAFC’s full position statement.

2009:

• NAFC wrote advocacy letters to the AMA, medical societies, CMS and private payers resulting in coding changes for coverage and appropriate reimbursement of new, efficacious technologies for moderating urgency incontinence and non-surgical treatment of SUI

• NAFC testified for better surgical outcomes at a public hearing of the NIH Office of Research on Women’s Health held at Women & Infants Hospital in Rhode Island.

• NAFC joined the Visioning Board, by invitation, of the International Council on Active Aging based in Canada.

• NAFC executive director met with the Truth in Medicine patients organized because of their concerns with surgical mesh and published blogs on the importance of fuller, informed consent and when second opinions should be pursued by patients.

• NAFC launched the Centers of Excellence initiative with invitations to form the National Steering Committee.

• NAFC facilitated a panel of World Federation of Incontinence Patients (WFIP) members from Egypt, Poland, and the Netherlands speaking on “Patient Perspectives in Accessing Health Education, Skilled Treatment, and Safe Options for Incontinence” during the 2009 meeting of the International Continence Society.

• Encourage your U.S. Senators to support the National Pain Care Policy Act of 2009. Some of you may face daily, chronic pain such as arthritis that obstructs your ability to reach the toilet safely and timely so as not to have an accident. Others of you may experience pelvic pain caused by ill-timed sphincter contractions, especially if you have a neurological disease such as Multiple Sclerosis. Still others may face daily bladder pain and urinary frequency signaling a disabling condition such as interstitial cystitis (IC). Or you may know and care about someone living with any one of these circumstances. There are millions of you. Get behind S. 660 structured to improve access to pain care and improve pain management.

RESOURCES

1. If you are not sure how to get your Senator’s Contact information, click here and type your zip code.

2. Follow the site tips to effectively communicate with Congress.

3. If you feel strongly about an issue write your local media.

Before 2009:

• Enlist representatives to sponsor H. R. 2727 “Quality of Life for Women Act” aimed to assign priority at the CDC for a heightened level of public health education about women’s urogynecological concerns, including urinary and anal incontinence, as well as pelvic organ prolapse and related pelvic floor health. The House bill needs more co-sponsors in order to progress through Congress and ultimately secure funding in a subsequent appropriations bill.

• Be aware of over reliance on the Center for Evidence-Based Policy in Oregon that applies a narrow definition of evidence-based medicine in its reports. The primary goal of state policymakers subscribing to these reports is to cut expenses, even if it means restricting patient access to some of the newer drugs and devices. Also watch out for the “best buy” medications list published by the Consumer Union that spreads the notion that differences among certain drugs do not exist because of a lack of data, when the real explanation in some cases may be that research showing differences has been screened out by the reviewers, has not been completed, or has not been published. Evidence-based medicine is a term to be guarded carefully for its proper use, as it is intended to include patient values, observational studies, and the expertise of clinicians.

• Watch out for payment systems for providers that substitute “efficiency” for “quality” ratings. Efficiency creates a scorecard that measures a number of different factors including the expenditures of physicians. Because efficiency looks at costs when calculating quality of care, it provides incentives for physicians to keep their costs down and use less advanced technology, rather than promoting the best treatments for each patient. NAFC agrees with the American Academy of Family Physicians (AAFP) that S.1356 “Medicare Value Purchasing Act of 2005” and H.R. 3617 “Medicare Value-Based Purchasing for Physicians’ Services Act of 2005” do not offer a formula for improving health care quality. As currently drafted, the system doesn’t help primary care doctors obtain the technology they need to. Stiffer reporting requirements coupled with declining reimbursements for Medicare patients threaten the health of the primary care practice itself. Similarly, NAFC remains concerned that any effort to proceed with the transition to a “pay for performance” methodology before addressing the underlying flaws in such areas as outpatient payment of physical therapy services lacks grounding. Like the American Physical Therapy Association (APTA), NAFC supports reforming the Medicare payment system to reward providers for meeting clinically appropriate benchmarks to promote quality and improve the health outcomes of the Medicare population. However, this bill as currently drafted places too much emphasis on meeting efficiency standards and not enough structure to insure improvement in quality of care.

• Complain against and reject the even more dangerous notion of “gainsharing” recently enacted by Congress. The concept allows a hospital to give to doctors financial kickbacks should they opt for less expensive, lower technology devices in diagnostics and/or treatment. Tell your elected officials in Washington that they should vote against such warped schemes to achieve savings. Click here to read an essay written by NAFC Executive Director Nancy Muller published in a recent issue of Modern Healthcare explaining more about why you should be concerned.

• Protect senior access to care by complaining about the government’s plan to cut Medicare reimbursements to physicians 37% over the next nine years. A report published by the American Medical Association (AMA) in September 2006 reports that nearly half (45%) of physicians surveyed said they will decrease or stop taking new Medicare patients when the first of nine years of payment cuts begins January 2007. Even more alarming, 73% said they will defer the purchase of new medical equipment and 65% will defer purchase of new information technology. If you’re concerned, contact your member of Congress to alter this plan so that seniors’ access to care is not at risk.

• Endorse the Training and Research in Urology (TRU) Act which now enjoys the bipartisan support of 26 Representatives (H.R. 944) and eight Senators (S.258). This legislation before Congress aims to create a new division at the National Institute of Diabetes & Digestive & Kidney Diseases of the Institutes of Health (NIDDK-NIH). The bill would direct the NIH to develop a national urology plan, manage government agency activities in urology research and create ten new dedicated research centers to cultivate a larger pool of talented doctors and researchers in the field.

• Rally in favor of a bill introduced in Congress to protect older Americans against costly and debilitating falls. Keeping Seniors Safe From Falls Act, or S. 1531, seeks to modify the Public Health Service Act, requiring the Secretary of Health and Human Services to conduct research and launch a national education campaign to prevent, therefore reduce, falls among older persons. Voice interest in the passage of this bill by visiting the “Advocacy” section at www.ncoa.org.

• To network with other organizations in such focused advocacy efforts, NAFC initiated the creation in 2003 of the Coalition For Improved Bladder and Related Pelvic Health. It is a diverse collaborative group of more than twenty members. View a list and visit each of their web sites. The group meets bi-annually in Washington, DC.

• Want to know more about what Americans say they are facing with respect to bladder control problems? Click here view an article written by Executive Director Nancy Muller and published in the April 2005 Journal of Urologic Nursing , reprinted with permission of the publisher: “What Americans Understand and How They are Affected by Bladder Control Problems: Highlights of Nationwide Consumer Research.”

• Support measures such as the Hobson-Tanner bill introduced by Reps. David Hobson (R-OHIO) and John Tanner (D-TENN) seeking to amend the 2003 Medicare Modernization Act (MMA) adding important protections for patients (requiring quality standards be implemented before competitive bidding for the supply of durable medical equipment used in home-care under Medicare Part B). Go to www.aahomecare.org under “Advocacy/Gov’t Relations” for the latest details. Urge your state’s members of the U.S. House of Representatives to sign as a co-sponsor of H.R. 3559.