This article appeared in the May 2013 edition of PRE-EMPT NEWS.

On May 27, 2013, PRE-EMPT in collaboration with MCHIP, organized “Preeclampsia 2013: Global Symposium” as a satellite event to the Women Deliver conference in Kuala Lumpur, Malaysia.

GUEST BLOG BY MARSHALL UKPOMA

From the shores of the Atlantic Ocean, Lagos-Nigeria, over the lovely Indian Ocean to the beautiful city of Kuala Lumpur (KL), Malaysia, it certainly was worth flying over 15 hours to arrive at the Kuala Lumpur convention center for the Women Deliver 3^rd Global Conference.

According to President of Women Deliver Jill W. Sheffield, guests ...

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.

Five weeks ago, the Preeclampsia Foundation led a historic gathering of nine companies, as well as some of the leading clinicians and researchers in the field of preeclampsia. We also had leaders and front line obstetricians from outside the "inner circle" to ensure we weren't doing too much naval gazing.

This Biomarker Consortium was evidence of several of our core values: we wanted to be influential, catalytic and bold. As the patient advocacy organization caring passionately about improving pregnancy outcomes, we were uniquely positioned to invite and get positive responses from every company who has or is investing in biomarkers as a more advanced technology to diagnose preeclampsia or screen pregnant women for future disease. 

I was energized by the ideas and commitment in the room, by the spirit of collaboration and the recognition that together we can do much to advance the momentum and attention on preeclampsia. A report is being developed ...

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 ...

By Quincy Fleming ~ Physical activity is something that my husband and I have always enjoyed, so it is only natural that my children have also gravitated towards endurance sports. It takes a lot of time and creative scheduling to get workouts in, but instead of trying to keep the workouts and family time separate, we find all kinds of crazy ways to include our two children. In fact, my husband and I are currently training for an Iron Distance Triathlon. Why, you might ask?

My children and I are preeclampsia survivors. And while we are lucky to have escaped with our lives, our health, our sanity, I know that we are at a heightened risk for heart disease, diabetes, obesity. It seems every lifestyle disease out there carries an extra punch for us. So we asked ourselves: why not embrace healthy lifestyles and exercise as part of our everyday family time?

Unfortunately, because the life that includes raising small children is demanding and time consuming, ...

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 ...

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 ...

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 ...

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 October 2011 issue of Expectations (featuring patient-centered care month) highlighted two powerful, silver-screen accounts of parents confronted with the unthinkable: a child's health crisis with no known cure leading doctors to tell them "there is nothing more we can do." Those simple words - and the prospect that there was no hope - prompted these every-day parents to take on the most important "projects" of their lives: saving the lives of their children.

These extreme examples of patient advocacy provide a humbling reminder of how important our own voices - and understanding of our conditions - are in our individual health care (during pregnancy and otherwise).

In thinking about patient advocacy in relation to my own pregnancy, I am ashamed I didn't ask more questions when I was ordered to take my first (and then second!) 24-hour urine test. I didn't know that a 24-hour urine test wasn't routine, and my doctor was certainly not offering up any ...

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 ...

Raising awareness in 2011 is no easy task.
 
A recent internet search of awareness efforts in May turned up 22 different causes, from asthma and allergy to stuttering awareness. As yet, the National Health Observances Calendar doesn't include Preeclampsia Awareness Month, although efforts are underway (with Congressional support) to add it.
 
So what can the Preeclampsia Foundation, an organization that recently celebrated its 10th birthday, learn from more established organizations and their campaigns?
 
Pink ribbons, red dresses, and yellow rubber bracelets immediately come to mind. Certain trends are prevalent in these successful awareness campaigns: a concerted public relations campaign, a celebrity spokesperson, partnerships with like-minded organizations, but most importantly, a clear message of the impact that a condition has on the American population.
 
Can an awareness "month" matter as we seek to raise the profile of our ...

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 ...

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 ...

Lauren Larsen thought she had a wonderful life: loving marriage, good friends, successful career and her first child on the way.  Shortly after entering the ninth month of her pregnancy, Lauren's life took a perilous turn due to the rapid onset of preeclampsia.  After more than a month in intensive care and years of recovery work ahead of her, Lauren emerged from her trials with the desire to build a life full of purpose and meaning.  Zuzu's Petals: A True Story of Second Chances is Lauren's real-life memoir of her personal battle with preeclampsia and her drive to make her "second chance at life" count for more than the average person.
 
2010 Saving Grace co-chair Autumn Spear described Zuzu's Petals as one of the best books she has ever read.  "Obviously I have a personal connection to the book having shared severe preeclampsia, ...

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 ...

The end of the year always brings with it the joys and blessings (and sometimes challenges) of the holiday season, the nostalgia of closing out another year, and the enthusiasm of looking forward to a new year of anticipated goals.  For the Preeclampsia Foundation, as we close out 2010, we close the door on our first decade as THE patient advocacy organization fighting to end the devastating impact of preeclampsia. It has been a very full ten years, beginning with the tumultuous first steps of any start-up organization and moving into the more recent years of growth and success. Last month, we published “Preeclampsia: A Decade of Perspective | Building a Global Call to Action”.  This 40-page publication captured our milestones as we celebrated our 10th anniversary, reported on the state of preeclampsia, and suggested a call-to-action for ...

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 ...

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 ...