After several years of trying, the Preeclampsia Foundation was recently notified that it has finally been accepted in to the Combined Federal Campaign (CFC).

As anyone familiar with the CFC knows, the application and review process for accep­tance as a CFC charity is rigorous. Among other things, to be part of the national campaign, each charity must prove that it actually does have a national presence. As always, our Preeclampsia Foundation volunteers came through with data, facts, and figures that enabled staff to complete the application in timely fashion and make the cut!

For those who may be unfamiliar with the CFC, it is the only authorized fundraising entity for federal government employees, including postal employees and military personnel. It enables all federal employees to easily donate money to the charity organiza­tions of their choice. CFC’s mission is to promote and support philanthropy through a program that is employee focused, cost-efficient, and effective in providing all fed­eral employees the opportunity to improve the quality of life for all. The inclusion of the Preeclampsia Foundation is exciting because it opens a potential funding stream that previously had not been available.

This year’s campaign will kick off on Sep­tember 1 and run through December 15. When asked about how PF members can get involved, Tom Viall, PF Executive Director said, “Obviously, if you work for the Federal government, we hope you will commit to supporting the Foundation by designating your contribution to CFC Donor Code 99819.” He continued, “if you know some­one who works for the ‘Feds,’ please don’t be shy about giving them information about PF (send them to our website or get some brochures) and ask if they would consider designating a contribution to CFC Donor Code 99819.”

The Federal Office of Personnel Manage­ment (OPM) administers the CFC which they describe as the world’s largest work­place charity drive. In 2005, the campaign raised $268.5 million. Since its inception in 1961, the federal community has do­nated more than $5.75 billion to the CFC. Employees and military personnel in the National Capital Area CFC, the largest local campaign, made pledges totaling more than $60 million, an increase of more than $2.4 million over the previous year.

Viall added, “It may take some time for the Foundation to build a following within the campaign, but…this can be big! Oh, did I mention that our CFC Donor Code is 99819?”

 

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What a whirlwind Walk season it has been! The final 2010 Promise Walk concluded just a week ago. This year, a newly formed National Walk Team (NWT) assisted coordinators
around the country in planning memorable and successful walks. The NWT also created a new and dynamic website (www.promisewalk.org) that enabled Walk Coordinators and participants to easily register and raise donations for their local Promise Walk.

More than 30 volunteer coordinators produced fabulous local events - 24 Walks across the U.S. taking place between April and August, including inaugural Walks in Atlanta and Chicago and adding a second Walk location in both California and Iowa. This volume represents a 60% increase over last year. The 24 Walks collected approximately $168,000, which is more than a 150% increase over 2009. There are many reasons for this increase: more walks, more volunteers, more people becoming aware, and the huge success of the new website.

Coordinators also did a fabulous job getting the media involved to raise awareness of preeclampsia. There were numerous online and local newspaper articles written, blogs posted, a radio broadcast in New Hampshire, and longer feature stories in Chicago, Iowa, Pennsylvania, and Wisconsin media. Coordinators took advantage of the Web 2.0 trend with a variety of social media outlets highlighting Walks everywhere.

All over the country, every person who attended or supported a walk deserves a special "thank you" from the Foundation, the NWT, and all those whose lives have been touched by preeclampsia. So... THANK YOU! Without our volunteers, sponsors, and participants, the Promise Walk couldn't have not just reached, but exceeded its goal!

National Walk Director Becky Sloan says she hopes to see more Walks across the country in 2011, at least one in every state. She commented, "We will have a new goal for 2011 and in order to reach it, we need volunteers - we need you! Walk season begins September 1 and concludes in June with the majority of walks taking place in May because May is dedicated as Preeclampsia Awareness month."

 

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The Preeclampsia Foundation announced today that Ms. Jill Siegel of Chicago, IL is the 2010 recipient of its annual Hope Award for Volunteer of the Year. This prestigious award will be presented to Ms. Siegel at its annual benefit gala, Saving Grace – A Night of Hope Around the World, on Saturday, November 6, at the Olympic Fairmont Hotel in Seattle, Washington. The award recognizes an individual who epitomizes the true spirit of volunteerism and has made significant contributions to the Foundation.

Eleni Tsigas, Executive Director of the Preeclampsia Foundation, said, “It’s hard to identify Jill’s most significant contribution as she has been instrumental in so many areas. In 2009, she served as our Saving Grace chair, organizing, motivating and arranging everything for our annual fundraising gala and throughout 2010 has done an overwhelming amount of work as our Director of Communications, including spearheading several new publications such as our Expectations newsletter and our 10th anniversary compendium.”

Nominations for the Volunteer of the Year award come from the volunteers themselves. A committee comprising former recipients and a member of the Board of Directors reviews the applications and scores them according to published metrics. These recommendations described Siegel as a tireless volunteer who is “passionate, works well with others…. a true leader, who recognizes people's strengths and talents and motivates them to use these assets to their best ability.”

Siegel suffered from severe preeclampsia and HELLP syndrome with the delivery of her daughter, Brooklyn, in 2004. She delivered Brooklyn 10 weeks early and suffered from multiple organ failure and a post-partum stroke. Upon “recovering” her neurologist told her she had been “the sickest person to leave this hospital alive.” She decided that she would mark her own recovery process by completing the New York City Marathon, which she did in November of 2006. During that time, she became acquainted with the Foundation and decided to turn her “recovery race” into a fundraising and awareness-raising effort. Her story was highlighted on Runner’s World website, calling attention to preeclampsia.

Since 2006, Siegel and her family have helped raise more than $190,000 to benefit the Foundation through her role as the 2009 Saving Grace Chair and co-coordinator of the 2010 Chicago “Promise Walk for Preeclampsia.” Jill Siegel is an award-winning urban planner who has taken a hiatus from her career in planning and economic development to support fundraising efforts at her daughter’s school. She is a native of Enid, OK and attended Agnes Scott College in Decatur, GA and Washington University in St. Louis, MO.

When asked to comment on her award, Siegel says, “I am so honored to be recognized by the Preeclampsia Foundation in this way. The commitment and passion behind this organization continues to amaze me and I am humbled to have been singled out among the many talented volunteers who give a portion of their lives to helping educate and save the lives of others.”

 

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Posted on in Advocacy and Public Policy

National Nurse-Managed Health Clinic Week (S. Res. 643) – Status: Passed Senate. Sponsor: Sen. Daniel Inouye (D-HI). Recognizes the role that nurse-managed clinics play in the health care system, designating the week of October 3 as “National Nurse-Managed Health Clinic Week.” States that clinics offer a broad scope of services that may improve access to care in communities, including prenatal care.

http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_bills&docid=f:sr643ats.txt.pdf

Tagged in: Advocacy Intervention
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Nationally Enhancing the Wellbeing of Babies through Outreach and Research Now (NEWBORN) Act (H.R. 3470) – Status: Passed House. Sponsor: Rep. Steven Cohen (D-TN). Authorizes $10 million for Fiscal Year 2011 and $50 million between 2011 and 2015 for a grant program to create, implement, and oversee pilot programs in areas with high rates of infant mortality.

http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_bills&docid=f:h3470rfs.txt.pdf

 

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111th Congress, Second Session

Congress has adjourned until after the November 2nd election. For the next few weeks, members of Congress will be focused, almost exclusively, on campaigning for re-election. Congress is expected to return in the third week of November for a “lame duck” session - a post-election legislative session during which members convene to wrap up unfinished business before the end of the calendar year. Because these sessions include those members who failed to win reelection and some who are retiring, lame duck sessions are not usually very productive and can be very volatile and difficult to predict.

While the exact agenda for the upcoming lame duck session is still unclear, measures that will likely be taken up include a food safety bill and certain tax provisions. In addition, Congress must address how to fund the federal government for the next fiscal year as they have yet to finalize all of the various bills that fund current government services and programs, including funding for the Centers for Disease Control and Prevention and the National Institutes of Health.

Continue to check back regularly for feedback and insight on issues of interest before and after the election, during the congressional lame duck session and as the federal agencies continue to conduct business.

 

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Raising Awareness of Hypertension (H. Res. 1656) - Status: Introduced. Sponsor: Rep. Alcee Hastings (D-FL). Aims to increase awareness of hypertension and reduce its prevalence in the United States through education, research, community programs, culturally competent strategies, and efforts to reduce the excess salt content in foods. The resolution notes that women with high blood pressure are more likely to experience certain complications during pregnancy, including kidney and other organ damage, low birth weight, early delivery, stillbirth, and maternal mortality.

http://frwebgate.access.gpo.gov/cgibin/getdoc.cgi?dbname=111_cong_bills&ocid=f:hr1656ih.txt.pdf

 

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PREEMIE Act (Prematurity Research Expansion and Education for Mothers who Deliver Infants Early Act) (S. 3906) - Status: Introduced. Sponsors: Sens. Lamar Alexander (R-TN) and Christopher Dodd (D-CT). Reauthorizes programs Congress established in 2006 to address premature birth. Calls for expanding work conducted at the National Institutes of Health, Centers for Disease Control and Prevention, and the Health Resources and Services Administration to conduct research and improve access to prenatal care. Among its provisions, the legislation creates trans-disciplinary research centers, will result in additional epidemiological studies, and supports telemedicine services to improve access to care. Expands and supports federal activities conducted under the 2006 statute, which would otherwise expire at the end of fiscal year 2011 (September 30, 2011). (Text of legislation is forthcoming)

 

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Legislation

Infant Mortality

• Children’s Act of 2010 (S. 3968) – Status: Introduced. Sponsor(s): Sen. Christopher Dodd (D-CT). Establishes a National Council on Children, with the purpose of improving preventive services and enhancing the well-being of young people. Reducing infant mortality and the number of babies born at a low birth weight as an objective.
http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_bills&docid=f:s3968is.txt.pdf

Other

Sens. Alexander, Dodd Mark National Prematurity Awareness Day

• On November 17, National Prematurity Awareness Day, Sens. Lamar Alexander (R-TN) and Christopher Dodd (D-CT) spoke on the Senate floor to mark the occasion. Sen. Dodd also urged colleagues to cosponsor the “Prematurity Research Expansion and Education for Mothers Who Deliver Infants Early (PREEMIE) Act,” commenting, “This important bill expands research into the causes and prevention of prematurity and increases education and support services related to prematurity.”
http://frwebgate.access.gpo.gov/cgi-bin/getpage.cgi?dbname=2010_record&page=S7954&position=all

Federal Agency News

New IOM Report Studies the Impact of Calcium and Vitamin D Intake

A new report from the Institute of Medicine (IOM) seeks to reconcile the many conflicting opinions that experts have voiced in recent years about Vitamin D and calcium intake. Some researchers have urged people to increase intake of these minerals as a way of preventing conditions like preeclampsia, whereas others have questioned their utility. Overall, the committee found “that the evidence supported a role for these nutrients in bone health but not in other health conditions.”
http://www.iom.edu/Reports/2010/Dietary-Reference-Intakes-for-Calcium-and-Vitamin-D/DRI-Values.aspx

HHS Seeks Evaluation of the Text4Baby Program

The Department of Health and Human Services (HHS) is currently seeking comments from stakeholders about the Text4Baby program. The agency collecting information about the utility of the program and the types of women who utilize it. In November, the program announced that it is planning a significant expansion, with the goal of reaching one-million mothers.
http://www.federalregister.gov/articles/2010/11/30/2010-30174/agency-information-collection-activities-proposed-collection-comment-request

In the News

Higher Risk of Preeclampsia Linked to Donor Eggs

A recent study conducted at a Rhode Island hospital and published in Obstetrics and Gynecology points to a potential link between the use of donor eggs during the in-vitro fertilization (IVF) process and preeclampsia. Though the study was small and researchers called for further study, the results showed that “about five percent of women who used their own eggs for IVF developed preeclampsia, compared to almost 17 percent of women who used donor eggs.”
http://www.reuters.com/article/idUSTRE6AO3DY20101125

Other

Registration Open for Society for Maternal-Fetal Medicine 2011 Conference

Registration has now opened for the Society for Maternal-Fetal Medicine’s 2011 annual conference. The conference, which will be held in San Francisco from February 7-12, will feature several sessions that touch on the topic of preeclampsia.
https://www.smfm.org/attachedfiles/SMFM2011PrelimProgram.pdf

 

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Posted on in Raising Awareness and Fundraising

As 2010 wraps up, many people will decide how they will make a final contribution to their favorite nonprofit organizations before the calendar year ends. Giving can provide hope and bring peace during an often otherwise hectic season. There are a number of ways to give – and not all of them financial. The gift of your time is valuable and appreciated.

You can take the time to give to the Preeclampsia Foundation the gift of a review. GreatNonprofits has partnered with GuideStar, the leading source of nonprofit information, to launch the “Donate A Review Campaign.” Guidestar serves a wide audience including grantmakers, government officials, academic researchers, and the media.

Whether you're a volunteer, donor, Board member, survivor or family member you can share how your life has been impacted by the Foundation. By taking a few minutes to tell your story, you can help raise awareness and reach new donors and supporters. A review does not need to be extensive. Even a couple of sentences will provide a powerful testimonial. Share your review today!

For those who like to gather with others this time of year, it’s not too late to host a holiday fundraiser. While baking your usual goodies, why not bake an extra batch? Wrap the treats in a bow, attach a tag that includes the Foundation’s website, and sell at a December meeting or group gathering! Organize a gift-wrapping or craft table at church, school, or local shop. Contact Dawn.Detweiler@preeclampsia.org to hear more about how to coordinate fundraisers to benefit the FOundation, or read her Top 10 Creative Seasonal Ideas.

If you’re like millions of people, you search the internet every day. Next time, use www.GoodSearch.com to raise easy money for the Preeclampsia Foundation. GoodSearch donates about a penny per search to charities named by its users, so make sure you designate the Preeclampsia Foundation before you search. Multiply daily usage by thousands, and the pennies really pile up. In fact, the Preeclampsia Foundation recently earned almost $200 thanks to smart online searching by our supporters.

Please join us this holiday season by using www.GoodShop.com to do your online shopping. Fifteen hundred stores, from Amazon to Staples, have teamed up with GoodShop and will donate a percentage of virtually every purchase to our cause. These merchants are also now posting thousands of money-saving coupons and free shipping deals on GoodShop.com. You're already shopping at these stores this season; turn your shopping into a painless fundraiser for preeclampsia research and education!


And, for those who are able to make a difference through a financial contribution, you can donate here, knowing your gift will be used to directly support programs and services that drive our mission forward and save lives.

 

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Volunteer Profile- January 2011

Nicole Purnell, Southwest Regional Coordinator

What was your experience with preeclampsia?
My pregnancy seemed rather normal and uneventful to me until I reached 33 weeks. My blood pressure had been creeping upward, but I wasn't concerned about it. I had a terrible cold and was taking meds that raised my blood pressure even further and that was when I was put on bedrest. At 34+5 weeks, I woke up in the middle of the night not feeling right. My husband took me to L&D just to be safe. Or so we thought. Once we got there and were checked in, the nurses started hooking me up to all the monitors. The monitors were silent and they were not able to find a heartbeat. When the epidural was place, I crashed. I remember my OB slapping me on the legs and yelling at me to breathe. I was rushed for an emergency c-section and they discovered that my placenta had completed detached and I was bleeding internally. Those first 24 hours I survived a second surgery to resolve the uncontrolled bleeding, DIC, kidney and liver failure and 13 blood transfusions. I spent 5 days in ICU and another 4 days on the post-op floor before being discharged. A few days after my discharge, we buried our son.

Why do you volunteer for the Preeclampsia Foundation?
There are so many reasons why I continue to volunteer. It started with wanting to spread awareness so other families would have to go through what we did. There is still a huge need to spread awareness and for mom's to take preeclampsia seriously. I want to be able to support families that have had a loss and let them know that they can survive through the pain. They can build a legacy for their children so that they live on.

What goals and dreams do you have for how the PF could inspire more local activities?
We all realize how traumatic preeclampsia is even with the best outcomes. There is a need to connect to other families that truly understand how pregnancy isn't always blissful and happy. We can support each other through the hard times and celebrate when we cheat this disease from another tragedy. We need leaders to take that step of faith to reach out to others locally. When we gather, we create awarness and community.

How aware were you about preeclampsia before/during your pregnancy?
I was blissfully ignorant. When preeclampsia was first mentioned to me, I ran to my pregnancy books which mention it in almost passing. The short paragraphs feed my naivete that all things would be fine and this was a rare complication and the worst that could happen is that I get put on bedrest and deliver a little early. I had no idea it could end like it did.

What resources do you find most helpful to volunteers and Foundation members?
The forums! The Grief and Loss forums were an amazing area of support for me. Not only did I find other moms that had lost babies, but had lost them in the very same traumatic way that I did. I found moms that walked in my shoes and there is immense comfort in knowing you aren't alone.

What has been your most gratifying moment as a Foundation volunteer?
Going to Saving Grace was an amazing event and it was wonderful to "meet" the people I have been working with for years. But hands down the most gratifying was the 2010 Promise Walk. There were many moments where I looked around in awe. To think that I would never have had that opportunity if my world hadn't been turned upside down. When we started adding up all the numbers in the end, I sat there and cried. Every person that came and every dollar that was raised gave meaning to my son's sacrifice. Even though he never took one breath, he has lives on through others.

 

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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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May is Preeclampsia Awareness Month, as well as being the month where all of us celebrate the many maternal figures that have positively impacted our lives. As many of you can attest, motherhood is about more than a single day's recognition for the work that you lovingly (or at times begrudgingly!) do year-round for your family.

The same could be said about Preeclampsia Awareness month, which has always been about more than raising a banner or hosting a single event. Preeclampsia Awareness month is about taking action on behalf of a greater family: the global community of women and their families. For the Preeclampsia Foundation, May is not a culmination, but a beginning. It is a call to ACTION.

As such, May's newsletter is a call-to-action to make preeclampsia not just "that pregnancy thing," but a word that reminds people of the 10,000,000 women across the globe that are impacted, sometimes devastatingly, by preeclamptic pregnancies each year.

Read Janel Kovarik's account of sharing her preeclampsia experience with three generations of women, or find out how Promise Walks are delivering local awareness. Discover how healthcare providers are joining our call-to-action to make a difference.

It is also with sadness that we mourn the loss of a great preeclampsia researcher, Dr. Richard Levine, whose contributions to the understanding of the pathophysiology of preeclampsia will continue to live on through his research projects.

We also encourage you to take part in a variety of awareness events this month, including social media events with the March of Dimes, our blog button advertising campaign and a meaningful public art display that could come to your community.

Happy Mother's Day to all!

 

 

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What was your experience with preeclampsia?

In my first pregnancy I wasn't worried about PE at all; everything was going smoothly until 31 weeks when, at our last childbirth class on a tour of the hospital's Labor & Delivery (L&D) ward, I started having painful contractions. We ended up calling my OB from the hospital parking lot and she told us to go back up to L&D where they hooked me up and determined - yes - these were real contractions & I was starting to dilate. Many hours of monitoring and couple shots of terbulaline later they sent me home. I ended up at my 37 week appointment, being sent over to L&D for an induction because of preeclampsia.

How aware were you about preeclampsia before/during your pregnancy?

I'd never really heard of preeclampsia before my first pregnancy. During my pregnancy as I started having high BP sometime around 34 weeks it got mentioned and I knew there were some things to watch for and to call in about. But no one ever mentioned that upper right quadrant pain was not normal.

My 2nd pregnancy was pretty uneventful, and even with mild high blood pressure, I made it to a planned induction at 38 weeks. I wasn't planning a 3rd pregnancy but a couple weeks after our 2nd daughter turned 2, we found out SURPRISE, I was pregnant! I was kind of panicked about a pregnancy starting with chronic hypertension, so I went looking for information and stumbled across the Preeclampsia Foundation forums.

Unfortunately, even on BP meds, my BP kept rising. Around 32 weeks, I started getting headaches and at 34 weeks I made my 1st trip to L&D because of it. They monitored me for a while, gave me pain medication & said it looked like things were heading downhill. It was Christmas and I desperately wanted things to be "normal" and be at home with our two other girls who were 4 and 2 so I took Darvocet to deal with the persistent headache and stayed home. In hindsight, this was a totally stupid plan!! I just thought if I could hold out until the 26th everything would be ok.

On Dec. 26, we went to my 36 week appointment and my OB took one look at me and sent me straight over to L&D. Our baby was born just after midnight early on the 27th. Her lungs were mature & she never needed any help breathing. I was discharged with really high BP (even on my BP meds) with the nurses telling me it was just because I was stressed about leaving my baby there. I ended up going back to the ER the next night with a headache worse than anything I'd had while pregnant (which I didn't think was possible!) and really high BP. We spent all night there, I got IV BP meds and morphine shots (which just took the edge off the pain) and went home in the morning with a prescription for an additional BP med. Over 4 years later, I still take a high dose of 2 BP meds. Last year I was diagnosed with Rheumatoid Arthritis so it's possible that was an underlying factor in my having PE 3 times. But our 3 girls are healthy and for that I am truly grateful.

Why do you volunteer for the Preeclampsia Foundation?

I volunteer because the Forums were my lifeline for information, support and sanity during my 3rd PE pregnancy. I know how much they helped me and I see how much we help families every day.

What are your goals and dreams for your involvement with the Foundation?

We live in Oklahoma City and I am very happy that we are getting our own Promise Walk this year! We've done the walk in the Dallas-Ft. Worth area for the past 2 years and plan to do it again in May. My mom and dad donate and come to walk with us because they are so grateful to the PF for what they've done for our family. I can only hope that our fundraising efforts can find a cure.

What has been your most gratifying moment as a Foundation volunteer?

There have been several times as a forum moderator that I have checked for updates first thing in the morning, or stayed up late hoping for an update from one of our posters going through a difficult PE pregnancy. I worry about them like they are family. But it makes me realize how much good we're doing when a member says that she credits us (the forum and the Foundation) for saving her life and/or the life of her baby with the information and support we gave her.

 

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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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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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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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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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What was your experience with preeclampsia?

I had severe preeclampsia (PE) and borderline HELLP syndrome with my first pregnancy at 35 weeks. I had warning signs as early as 30 weeks that I reported to my doctor, but he blew me off as a first time mom who didn't know what pregnancy was like. By the time I was diagnosed, I was in heart failure, cerebral edema, and had platelets low enough to qualify for class II HELLP. I was in really bad shape. I was transferred to another hospital, and the doctor there said we should pray the induction worked because a c-section would kill me. My first daughter was born mildly IUGR. She's almost 9 and doing well today.

I found a new doctor who monitored me closely for my second birth. I started showing the same early warning signs at 32 weeks, and was induced at 37 weeks with mild PE. My second daughter was also mildly IUGR and still suffers ill effects at 5 and a half.

We wanted a third child and ended up with twins. Surprise! It was terrifying. I was already at high risk with my history, and here I was carrying multiples. I was diagnosed with PIH at 22 weeks, mild PE at 31 weeks, hospitalized at 33 weeks, and induced at 36 weeks after being on some form of bedrest for 14 weeks. My third daughter and son were NOT growth restricted. (I credit low dose aspirin for that.) A few hours after birth, I slipped into a coma with severe postpartum PE. The worst of it lasted about 24 hours, then started to turn around. Three years later, I'm completely recovered.

How aware were you about preeclampsia before/during your pregnancy?

I had never heard of PE before I was diagnosed in my first pregnancy. I knew something wasn't right, but I trusted my doctor. With my next pregnancies, I learned everything I could, and did my best to advocate for myself and my children. I became an active lurker and occasional poster on the PF's forum during my twin pregnancy, and it was a huge help to have that support.

Why do you volunteer for the Preeclampsia Foundation? What volunteer positions have you held?

I volunteer for the PF because my daughters and future daughter in law are all at higher risk because I had it. I don't want them to go through what I did, or my grandchildren to be premature and growth restricted.

I trained for a marathon that I used as a fundraiser for the PF. This was my second marathon and ninth endurance race. I ran the Leading Ladies marathon in South Dakota on August 19 of this year. I injured my foot a few weeks before, but had clearance from my doctor to run. I made it 23 miles on a bad foot! I was disappointed not to finish the full 26.2, but I thought back to my births. Sometimes you have to change your plans to ensure the best possible outcome. Thinking of the women I've met through the PF definitely helped me through my training and a brutal race.

I will be joining the planning committee for the Chicago Promise Walk this year. I'm excited to be more involved with that, as well.

What are your goals and dreams for your involvement with the Foundation?

I have a big goal for continuing to run marathons and raise funds and awareness for the PF. (Assuming my foot heals well.) My kids are still young, but in a few years I hope to run a series of races across the country (as of now, it's 11 full marathons and 13 half marathons in one year.) The fundraising is important, but more important is raising awareness all across the country so women have the information they need to get proper care.

I keep a blog about my running and preeclampsia awareness: whatyourunningfor.blogspot.com

What has been your most gratifying moment as a Foundation?

I really enjoy getting to know other mothers and hearing their stories. I hate that we have PE in common, but I hope knowing they're not alone can help them work through what happened as it did for me. I share Survivor Stories on my blog, and several of the women have thanked me for the opportunity to give voice to their experiences.

 

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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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