Advocacy and Public Policy

One of the wonderful aspects of living in the United States is that you can directly influence the government process at the local, state, and federal levels. This influence only requires passion and persistence. While the Preeclampsia Foundation is thrilled that our collective passion and persistence led to May 2013 becoming the first federally-recognized National Preeclampsia Awareness Month, our work is far from over. We still need your help to secure more state and local preeclampsia awareness proclamations.

You may be asking why a local or state proclamation has value if the federal government already designated the month of May for preeclampsia.

 

All policy work ultimately begins back home: educating elected officials about preeclampsia -- what it is, why research is needed to identify and prevent it, why new screening and diagnostic tests are essential to identifying and responding to it, and why access to prenatal care is essential to saving the lives of moms and babies. Your efforts to educate state and local officials will establish an educated crop of policymakers for years to come, whether many move on to greater levels in government, or they remain influential in state and local government and can also weigh-in with Congressional lawmakers.

 

You may have heard the expression "All politics is local." That's because a politician's success is directly tied to his or her ability to understand and influence the issues of his or her constituents. You are the "constituent." No one is more passionate about preeclampsia than a woman who has faced the disease or a family affected by it. Elected officials at all levels of government are bombarded with advocacy requests on every topic. But, public officials are elected by you and work for you; they listen to their constituents first and foremost.

 

Being an effective advocate for preeclampsia only requires that you share your story. Did you experience this dangerous disease? Did your pregnancy reach severe or critical status? Were you unaware that you had preeclampsia and went undiagnosed, hence putting yourself and your pregnancy at risk? Your advocacy can directly result in support for preeclampsia research funding, health education and literacy campaigns that help reach women and families, coverage for maternal health care services, and so much more.

 

Seeking a proclamation for your state or city is the first step to building a relationship with your elected officials.

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While the 2012 campaign cycle has been drawn out for months, primary season is beginning to wind down, and the choices of candidates for the general election in November 2012 have become more apparent. Voting is an important civic responsibility, and making an informed choice when voting is essential. Below are some tips to help you research candidates' positions on issues that are important to you.

  1. Decide what issues and qualities are most important to you. Is it health care, the economy, or foreign policy? Think about what personal qualities you think are important: past experience, previous leadership or political positions, or personality.
  2. Visit the candidates' websites - either their official website if they already hold office or their campaign website - to find out their stances. Candidates generally have an "issues" section where they address major policy topics.
    1. Presidential candidate sites: http://www.barackobama.com and http://www.mittromney.com.
    2. Congressional candidate sites: www.house.gov and www.senate.gov. To find the Representative in your congressional district, enter your zip code. To find the Senators in your state, look by state. The Representatives and Senators who are running for re-election will also have a separate campaign website, so be certain to look for those sites, as well.
    3. Other candidate sites: To find out who is challenging a current Member of Congress, visit a site like the League of Women Voter's Vote411 site. Vote411 allows you to enter your address in order to identify the candidates who are running in your state or district.
    4. State Representative candidate sites: Look up the website for your state's State Board of Elections for links to local candidates.
  3. Look up a current Member of Congress' voting record. Legislation the Representatives and Senators have introduced, formal statements they have made, and how they have previously voted on issues can be found by visiting www.thomas.gov.
  4. Look up official campaign websites. Whether a standing Member of Congress or a candidate for congressional office, everyone has a website, and those websites include a biographical section, which can provide information on the candidates' previous experience and positions on the issues.
  5. Pay attention to who has endorsed the candidates and where their campaign funding is coming from.
  6. Carefully consider what others - opposing candidates, the news, even your friends and relatives - say about the candidate. Be on the lookout for any bias or "spin" and be wary of any TV ad tactics appealing to emotions. Look for any buried messages about issues beneath the attacks.
  7. Finally, evaluate and match your findings with the issues and qualities you outlined as important to you. In some cases, a clear choice that matches your criteria may be evident early on in your research. Other times, a distinction between candidates or someone who obviously identifies with your views may not be as clear.
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Last week, the Supreme Court upheld the constitutionality of The Patient Protection and Affordable Care Act, otherwise known as the "health reform law." This means that implementation of this landmark legislation can continue to move forward. However, the law continues to be the subject of debate through this year's presidential and congressional election cycle, and depending on the election results could be altered by Congress and the White House in the future. As it currently stands, the law directly benefits childbearing women and newborns by:

  • prohibiting the use of pregnancy as a preexisting condition by health insurance providers;
  • widening access to certified nurse-midwives by eliminating inequities in how they are reimbursed under Medicare;
  • paying for home visits by nurses for at-risk families during or after pregnancy;
  • expanding access to primary maternity care by improving Medicaid coverage of freestanding birth centers;
  • expanding access to Medicaid and affordable private health insurance for women of childbearing age who are now uninsured or under-insured;
  • requiring maternal health coverage as an essential health benefit to be provided by individual and small health plans offered within state health care exchanges.*

As the election nears, we will continue to keep you updated on issues related to maternal health that are affected by the health reform law.

*Some information above provided by Childbirth Connection

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On May 24, 2012, the U.S. Senate passed the Food and Drug Safety and Innovation Act, which reauthorizes funding for activities related to the drug and device approval process at the U.S. Food and Drug Administration (FDA). The legislation also includes requirements and provisions for faster review of new and innovative therapies in order to allow patients to be able to access these therapies more quickly. The next step is for the U.S. House of Representatives to pass the bill, and then a final bill will go to the President for signature.

During debate on the Senate bill, Senator Mark Warner (D-VA) spoke on the necessity of finding ways to strengthen and improve the FDA’s review process of new and innovative diagnostic tests, including biomarkers. While biomarkers are not specifically addressed by the legislation, during his remarks, Senator Warner specifically cited preeclampsia as an example of why the country needs to move biomarkers forward and develop a better process for the FDA to work with industry. The following is a copy of the Senator’s remarks as recorded in the Congressional Record:

“Preeclampsia is a disorder that affects hundreds of thousands of pregnant women every year, which undiagnosed, can put a woman at risk for death and the fetus at risk of still-birth.

Doctors currently use a mix of imprecise signs and symptoms to diagnose it but often times such signs and symptoms are wrong. However, researchers have found a biomarker—a particular biological process or sign—that can accurately identify women with preeclampsia that are at risk for pregnancy complications.

Unfortunately, tests for novel biomarkers are taking five or more years to get approved by the FDA, delaying patients from receiving the benefits of more accurate diagnoses and treatments.

I was pleased that a recent commitment letter between the FDA and industry specifically mentions the FDA’s commitment to work together with industry to create a transitional IVD, or “T IVD” process for the development of tests for novel biomarkers.

I look forward to seeing how this T IVD process develops in discussions between FDA and industry and am interested in progress towards its implementation, which supports advances in the sciences and promotes access to these emerging diagnostics.

If reducing healthcare costs is a national priority, we need to act today. I encourage my colleagues to pass S. 3187 and allow the FDA to work more closely with the medical industry to safely bring new technologies to the marketplace.”

The Preeclampsia Foundation is engaging with industry and the federal government to ensure biomarkers for preeclampsia can be carefully considered and the barriers to movement can be understood and addressed. The Foundation is pleased to have Congressional attention focused on this issue.

 

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During the week of March 26, 2012, the Supreme Court of the United States heard arguments about the constitutionality of the Patient Protection and Affordable Care Act (ACA), otherwise known as the Health Reform Law. As the Preeclampsia Foundation continues to advocate before state and federal policymakers on maternal health issues, we are watching closely to understand what affect the Court's decision(s) will have on women and their families.

The following is an overview of the key questions being considered by the Court after three days of debate - the longest hearing on a single case heard by the Supreme Court since 1966.

Should the law even be considered by the Court at this time - the Anti-Injunction Act? The court must determine whether the case can be decided now, or whether the court must wait until 2015, when the tax provisions of the law (individual mandate requiring individuals to purchase health insurance) go into effect. The basis for this decision is based on a 140 year-old law called the 1867 Tax Anti-Junction Act, which says that people can't sue over a tax until they actually pay the tax. This decision affects whether the court can consider the other issues below.

Is the individual mandate constitutional? The court must determine whether the federal government has the constitutional authority to require that every individual purchase health insurance or pay a penalty if they refuse to do so.

If the individual mandate is ruled unconstitutional, what happens to the rest of the health reform law? At issue is whether the individual mandate can be severed from the health reform law without dismantling the entire law. Funding from individuals purchasing insurance is meant to cover the costs of other programs in the law and ensure program viability. The Obama Administration is arguing that if the mandate is ruled unconstitutional, the rest of the law should stand with two exceptions: the law's requirement to cover people with pre-existing conditions and the requirement that insurers use a "community rate" that ignores individual health status.

What about the health reform law's Medicaid expansion? Medicaid is a joint federal-state program. Currently, individuals who earn up to 100 percent of the federal poverty level are eligible to participate, and states receive federal funds to support the program. Under the law, individuals who earn up to 133 percent of the federal poverty level will qualify for Medicaid in 2014. If any state does not comply with that expansion in eligibility, those states will forfeit any federal Medicaid funding. The court must determine whether the federal government has gone too far in pushing the states.

Here are some key provisions in the ACA that affect maternal health:

  • Establishes state health exchanges - markets where individuals and small businesses can select the best health insurance coverage to meet their needs;
  • Requires individual and small group plans within and outside the state exchanges to cover essential health benefits, including maternity and newborn care;
  • Provides insurance subsidies for those with incomes between 100-400 percent of the poverty line;
  • Expands Medicaid eligibility to individuals with income up to 133 percent of the poverty line;
  • Eliminates lifetime and annual limits on benefits;
  • Requires insurance companies to guarantee and continue coverage;
  • Creates high risk insurance pools for people who can't get insurance on the market currently;
  • Requires coverage of women's health preventive services without a co-payment;
  • Prohibits excluding patients with pre-existing conditions from insurance plans.

Source: Drinker Biddle & Reath, Capitol Health Record Blog, www.capitolhealthrecord.com

 

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The Foundation is closely tracking and providing perspective to Congressional efforts related to maternal and neonatal health and well-being, especially as they may impact preeclampsia awareness and related care. Two pieces of legislation of interest are the PREEMIE (Prematurity Research Expansion and Education) Reauthorization Act and the Birth Defects Prevention, Risk Reduction and Awareness Act.

The PREEMIE Reauthorization Act, sponsored by Reps. Leonard Lance (R-NJ), Anna G. Eshoo (D-CA) and Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO), would expand research, education and intervention activities as they relate to preterm birth. The legislation will also work to promote the use of evidence-based standards of care for pregnant women. The original PREEMIE Act was signed into law in December 2006, and the programs supported through the law at the Centers for Disease Control and Prevention and other federal agencies and subsequent resources provided to states are in need of reauthorization in order to continue and expand.

The Birth Defects Prevention, Risk Reduction and Awareness Act, sponsored by Rep. Rosa DeLauro (D-CT) and Senator Kay Hagan (D-NC) seeks to provide information to pregnant women and their health care providers about medications, chemical exposures, infections and other exposures linked to adverse outcomes to a healthy pregnancy, including birth defects. The legislation provides funding for pregnancy risk information services (PRIS) that provide counsel to women. Over the years, several of the centers that provide these services have closed due to lack of funding. Recent research has identified a link between women who suffer asthma being at greater risk for preeclampsia. The services offered through PRIS could offer resources to help women understand risks such as this.


The Preeclampsia Foundation joins the March of Dimes Foundation, the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, and the Association of Women's Health, and Obstetric and Neonatal Nurses in supporting both of these important pieces of legislation.

 

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In late April, the Preeclampsia Foundation continued its federal advocacy efforts, meeting with representatives of the National Institutes of Health in Bethesda, Maryland. Joined by Preeclampsia Foundation Medical Advisory Board member Dr. James Martin, who was recently inducted as the President of the American Congress of Obstetricians and Gynecologists, the Foundation sought to understand the breadth of preeclampsia research being conducted across the NIH institutes and centers.

The Foundation came to the meeting with three simple messages and requests: the institutes should collaborate to share research findings; NIH should report its annual spending allocations dedicated to preeclampsia and related research; and NIH should work with the Foundation and other partners to more effectively improve communication about preeclampsia research findings.

Through its efforts, the Foundation learned that 9 of the 27 institutes/centers at NIH conduct or have recently conducted research on preeclampsia. These range from the National Institute of Child Health and Human Development and National Heart Lung and Blood Institute, which together conduct a majority of research in this field, to the National Institute of Environmental Health Sciences and the National Cancer Institute.

During the meeting representatives from each institute presented on their areas of research focus and sought to learn more about the Foundation's research efforts and ways the Foundation might help make NIH information more readily available to patients and providers.

To build on this meeting, the Preeclampsia Foundation is seeking legislative language in partnership with members of Congress that would further encourage NIH institute collaboration in the field of preeclampsia research and require NIH to report its funding allocations for preeclampsia research. With this information, the Foundation hopes to begin to advocate for more efficient, effective and additional research dollars to ensure preeclampsia is and remains a focus within women's and maternal-fetal health research.

 

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Despite spending more money than any other country on health care, the United States has a higher maternal mortality rate than 40 other countries, with more than two women dying every day in the United States from pregnancy-related conditions, such as preeclampsia and eclampsia. “Near misses” are also important to quantify and understand. According to a 2010 report released by Amnesty International (AI), nearly 65,000 women almost died from pregnancy-related conditions in 2004 and 2005. Approximately 16% of the reported maternal deaths were due to preeclampsia and eclampsia. The AI report also indicated that as alarming as these figures are, they “probably significantly understate” the actual numbers because of the limitation of maternal health statistics currently being captured.

On March 3, 2011, the Maternal Health Accountability Act (H.R. 894) was introduced by Rep. John Conyers (D-Mich) to work toward establishing an accurate picture of maternal mortality in the United States. The bill seeks to provide funds to states to establish Maternal Mortality Review Committees that will allow states to accurately report and understand the causes and effects of maternal mortality. HR 894 also directs the Secretary of Health and Human Services (HHS) to organize a national workshop with a goal of developing uniform definitions of severe maternal morbidity in the United States and work to eliminate disparities in maternal health outcomes. A more formal reporting and analysis process should lead to improvement in care evaluation, the development of guidelines and the improvement of research through the data collected.

It’s important for patient advocacy organizations like the Preeclampsia Foundation to be part of the planning process in partnership with care providers and other stakeholders. In the coming weeks, we will be engaging Rep. Conyers and other co-sponsors of the bill to offer our recommendations about how the legislation can build on and seek to expand state-based initiatives already in place.


By shining a light on the women and babies who are most at risk of pregnancy-related complications and death, the bill seeks to make a significant step forward toward reversing current trends and improving pregnancy health and well-being in the United States.

Maternal Health Accountability Act of 2011 (HR 894) - Amends title V (Maternal and Child Health Services) of the Social Security Act to direct the Secretary of Health and Human Services (HHS) to award grants to states for: (1) mandatory reporting to the state department of health by health care providers and other entities of pregnancy-related deaths; (2) establishment of a state maternal mortality review committee on pregnancy-related deaths occurring within such state; (3) implementation and use of the comprehensive case abstraction form by such committee to preserve the uniformity of the information collected; and (4) annual public disclosure of committee findings.

Directs the Secretary, acting through the Director of the National Institutes of Health (NIH), to: (1) organize a national workshop to identify definitions for severe maternal morbidity and make recommendations for a research plan to identify and monitor such morbidity in the United States; and (2) develop uniform definitions of severe maternal morbidity, a research plan, and possible data collection protocols to assist states in identifying and monitoring such cases.

Amends the Public Health Service Act to direct the Secretary to carry out specified research and demonstration activities to eliminate disparities in maternal health outcomes.

 

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Creating a strong advocacy voice for preeclampsia in the halls of Congress and within the federal agencies is a multi-step process. Great strides were made in February toward achieving this goal.

Early each calendar year, congressional offices allow organizations to submit to them spending requests and directive language in relation to federal programs that addresses the following fiscal spending year. The congressional offices then review the requests and set their priorities. The Foundation through its advocacy efforts and work with an outside government relations firm is working to cultivate strong relationships with federal lawmakers to advance preeclampsia research and programs. The Foundation's DC representatives worked with Congresswoman Lucille Roybal-Allard (D-California), a champion on women's health issues and a representative with strong interest in preeclampsia research. At the Foundation's urging, the congresswoman has agreed to submit congressional language (called report language) on preeclampsia research. The language will be considered for inclusion as part of the Labor, Health and Human Services Appropriations legislation under the National Institutes of Health appropriations section of the bill. The following is the language to be submitted as supported by the Foundation:

“The Committee is concerned that not enough progress has been made in understanding the causes of and risks associated with preeclampsia and the related conditions of eclampsia and HELLP syndrome, which can result in disability or death for the mother, and premature delivery for an infant. The Committee encourages the institutes to work collaboratively to share research findings and facilitate additional research into ways to better prevent, manage and identify interventions for these conditions.”

The Foundation is also working toward developing strong ties with the Congressional Caucus for Women’s Issues and other members of Congress who have health care backgrounds or are supporters of maternal and child health issues. Last month, the Foundation worked with Congresswoman Lois Capps (D-California) and Congresswoman Roybal-Allard to have the members submit a letter to National Institutes of Health (NIH) Director Dr. Francis Collins, inquiring as to the current funding allocations at NIH for preeclampsia and other hypertensive disorders of pregnancy. Rep. Capps serves on the House Energy and Commerce Committee, which has jurisdiction over NIH programs and policies and Rep. Roybal-Allard serves on the House Appropriations Committee and health subcommittee, which has jurisdiction over NIH spending. Through this effort, the Foundation learned that over $17 million is currently being spent on preeclampsia research and that this research is conducted across nine institutes, ranging from institutes focused on child health to those focused on environmental health. The Foundation is now working to meet with representatives of the institutes to discuss this research and offer insight. A meeting is anticipated in April.

 

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Policy advocacy at the federal, state or local level can be an effective way to impact the "problem" of preeclampsia in the U.S. Public awareness, research funding levels, drug development and many more issues all vie for our attention, and for the attention of the leaders and influencers who can do something about it. Please help us set our advocacy agenda by taking a brief survey by Feb. 15. The survey asks you to weigh in on what you think our advocacy priorities should be, how you can get involved, types of actions you can take (from e-mailing to meeting with elected officials and their staff), and your preferred methods of communication. Your answers are very important to us and will take less than 10 minutes to provide.

Visit our advocacy page to learn more about how you can let your elected officials hear your voice and what we're doing in Washington, DC, and elsewhere. For instance, USAID recently published an Update to their Five-Year Strategy on Maternal Health, with extensive plans to decrease maternal mortality due to preeclampsia and eclampsia. While our respective organizations may disagree on strategies, we are very much in agreement that a woman's "ability to recognize the signs and symptoms of an illness, its perceived severity, and maternal health care-seeking behaviors during pregnancy and the postnatal period are associated with maternal-newborn mortality and morbidity outcomes."

May is Preeclampsia Awareness Month and we are seeking a Congressional Proclamation to support our national awareness efforts. We'll need your support to succeed, so stay tuned for ways you can help.

 

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