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

 

Hits: (257)

Posted on in Research

Every two years, the International Society for the Study of Hypertension in Pregnancy (ISSHP) World Congress brings together the top researchers and clinicians in the field of hypertension in pregnancy to share innovations and encourage collaborations in research and clinical practice. As in year's past, the Preeclampsia Foundation participated in the 2012 meeting held July 9-12 in Geneva, Switzerland.

Like the current Olympics which inspire us to "Citius, Altius, Fortius" (Latin for "faster, higher, stronger"), the World Congress inspires participants to demonstrate new found knowledge and skills, and to push each other forward. In the enthusiasm of science-swapping and networking at a meeting like ISSHP, sometimes the larger purpose of our endeavors - saving lives and improving health outcomes of mothers and babies worldwide - may be forgotten by those racing from one intriguing lecture to the next.

That's where the Preeclampsia Foundation comes in. It is a testament to the extraordinary outreach of our mission that not only are we widely recognized as a key patient resource by individual health care providers, but are sought out by industry leaders as THE voice to provide a reminder of the patient perspective amongst the plethora of science and research. Our impact can be summarized in that one word: "voice." By joining our members' collective experiences along with the experience of wonderful new friends from European patient advocacy groups, we have become a powerful entity for change. A voice that is not only heard, but valued.

The Foundation's efforts to improve health care practices and catalyze research were also felt at ISSHP. Two investigators presented research findings developed through our collaboration in the Brain Study- and for many of our readers - it was your participation in this study that provided such meaningful data. In one oral presentation, findings suggested an association between history of preeclampsia and post-traumatic stress disorder. In the other, findings suggested an increase in neurocognitive disorders among women with history of preeclampsia. Both studies are being developed for publication and will be promoted via this newsletter when they're published. Both studies were exceedingly well received, with other researchers encouraging us to conduct further studies on long-term patient impact to improve clinical care.

We also presented two research travel grants, which helped promising young investigators attend this important meeting, interact with seasoned researchers, and become committed members of the hypertension in pregnancy community.

Every day, our website and social media platforms receive thousands of visitors from more than 200 countries around the world, so it was particularly wonderful to meet global health care providers who interact with those patients and who themselves use our website regularly. Unfortunately, we are sometimes the only source for additional patient support and education. So though no one received any laurel wreaths or gold medals during the Foundation's international journey, the patients are the real victors through the furthering of global preeclampsia research.

 

Hits: (324)

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 our partners, allies and supporters for the next decade. Included was a Proclamation signed by world health leaders representing 32 nations that called for solidarity in six action areas.


Developing this report was, as I stated in the Introduction, a humbling and eye-opening experience. Humbling to realize how far we’ve come in ten short years – the programs we’ve produced in research, education, awareness and advocacy, but also how vast the road ahead still lies in the US and especially in low- and middle-income countries. We plan to continue to play a key role in filling that gap and driving awareness of a global health problem so devastating to mothers, babies and families. We invite you to join us on this life-changing journey.

Hits: (122)

Posted on in Letter from the Executive Director

It is fitting that November is the month of thanks-giving. At the Preeclampsia Foundation, we have many people and much to be thankful for, starting with the launch of our new website. If you haven't yet, please visit our new home. Same address - www.preeclampsia.org - but with a complete renovation that allows us to include more content and address our ever-expanding mission into areas such as advocacy, international support, and research communications.

The team including Dan Verakis, Amit Jesani and a host of developers literally spanning the globe, are to be commended for leading us through this complex process. Please bare with us as we will inevitably hit some unforeseen snags in our database or in the website itself. Rest assured, security and your privacy have not nor will ever be compromised. Your trust in us is paramount.

Our trusted science writers, including Caryn Rogers, Heather Curtis and several members of our Medical Board ensure that the latest, accurate health information is online and we thank them for their valuable contributions. We take our position as the #1 source of preeclampsia information on the internet very seriously, and will continue to provide patient information that is medically accurate and helpful. Please let us know how we are doing to meet your needs.


2010 has been a year of progress and reflection for the Foundation, as we celebrate our 10th anniversary, culminating at Saving Grace - A Night of Hope in Seattle on Nov. 6. We are so thankful for the extraordinary efforts put forth by co-chairs Bonnie Rosenbloom and Autumn Spear. The event promises to be quite inspiring and entertaining. There, a beautiful book, Preeclampsia: A Decade of Perspective, will be debuted and would not have been possible without the tenacity of Jill Siegel, Laney Poye, Marshall Lindheimer, dozens of writers and contributors, Ruder Finn (London), DrinkerBiddle (Washington, DC), and the beautiful graphic design services donated by Hannah Wygal of Monster Design. This 40-page publication serves as not only a compendium of our milestones, but as a call-to-action to health care professionals, patients, researchers, policymakers and others to work together on our ambitious but life-saving mission. The future we envision is within our grasp.

One of the most exciting aspects of our recent participation at the ISSHP World Congress in Melbourne, Australia, was receiving the overwhelming support of these world leaders in preeclampsia. Our collective call-to-action is captured in this Proclamation and will further materialize as we work toward a Global Preeclampsia Awareness Day in Geneva in 2012. I'll report more on our successes at the ISSHP World Congress in the coming month.

We are also so thankful for the many families who look for creative and challenging opportunities to raise awareness and funding, like Laura Dale who is tackling a half marathon effort!

We are grateful for your stories - stories that inspire, help us feel a little less alone, and remind us that amidst tragedy, life can be reborn. Renee Feagan found her life completely changed after her preeclamptic pregnancy and honored us with the sharing of that experience.

So much to be thankful for, not the least of which that none of this would be possible without your support. Please take a moment to experience our donate button on the new website and share your feelings of gratitude with us, too!


Sincerely,


Eleni Tsigas
Executive Director

Hits: (141)

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.

We would like to thank the Sabrina’s Foundation for their generous support in making this symposium possible. The symposium was designed for ministers of health, health managers and administrators, doctors, pharmacists, midwives, nurses, politicians and patient advocates committed to decreasing the global burden of maternal and perinatal mortality and morbidity related to pre-ecalampsia and eclampsia. Interactive panel and group activities included discussion of the WHO preeclampsia and eclampsia recommendations, implementation strategies, global commodity issues, quality indicators and current research initiatives.

In addition to these discussions, Marshall Ignibosa Ukpoma from Nigeria addressed the symposium to provide a family perspective on losing his wife and child to preeclampsia. His book “283 days after I do” is available on Kindle and an element of his advocacy and outreach efforts to raise awareness about preeclampsia.

The first panel focused on global approach, comprising of Peter von Dadelszen, Matthews Mathai, Jeffrey Smith and Hillary Bracken, included highlights on PRE-EMPT research, WHO Knowledge Translation, program implementations initiatives and preeclampsia and eclampsia quality indicators. Another qualitative focus was provided by Asif Raza Khowaja and Marianne Vidler on the decisionmaking dynamics and determinants of care seeking for preeclampsia community perspective in Pakistan and community perspectives of preeclampsia and eclampsia in low and middle income countries, respectively.

The second panel was focused on commodity supplies for preeclampsia: global challenges and solutions. Hans Vemer presented on the global initiatives for commodities for preeclampsia while Lily Dwerani presented on the issues related to MgSO4. In the latter half of the panel, Hans Vemer and Deborah Armbruster led a discussion on addressing some critical questions around the formulation and standardization of MgSO4.

In addition to two panel discussions, the symposium also had three problem solving stations focused on: 1) mild and severe preeclampsia: monitoring and expectant care led by MrutunjayaBellad and Peter von Dadelszen; 2) advocacy and leadership for a global approach, led by Tabassum Firoz; and 4) MgSO4 and antihypertensives: commodity management and appropriate use, led by Hans Vemer and Jeffrey Smith. The symposium had participants from over fifteen different organizations and 13 different countries. We thank all our partners and collaborators who helped bring preeclampsia into the discussion at this conference through this symposium.

PRE-EMPT at Women Deliver 2013: A recap

The Women Deliver conference was held in Kuala Lumpur, Malaysia between May 28-30, 2013. The conference included over 4500 participants from 139 countries and over 2200 organizations. Also, Jeffrey Smith, Deborah Armbruster, and Peter von Dadelszen and Sadaf Khan (PATH) led a session on the latest evidence on maternal health and where it is leading us. The session received an overwhelming response from the Women Deliver community. Many PRE-EMPT partners among several of our collaborators actively participated in presenting various sessions at the Women Deliver conference including Ana Langer, Zulfiqar Bhutta, Metin Gulmezoglu, Beverly Winikoff, France Donnay and Matthews Mathai.

 
Hits: (181)

Marshall Ukpoma delivers emotional plea for healthcare improvementsGUEST 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 3rd Global Conference.

According to President of Women Deliver Jill W. Sheffield, guests from about 145 countries were hosted in this year’s conference with the hope that one day, through the collaboration of every stakeholder, women across all geographic, socioeconomic, and cultural lines will have access to the care they need, and no woman will die giving life.

This year’s event featured various sessions of talks, focusing on women and girls, delivered by experts and policy makers across genders, sectors and generations, and from around the globe.

Pre-conference events took off at various centers in KL, Malaysia, and it would have been an incomplete event if issues concerning preeclampsia and eclampsia were not discussed! Thanks to support from Sabrina’s foundation USA, USAID, MCHIP, the PRE-eclampsia Eclampsia Monitoring Prevention and Treatment Team, University of British Columbia (PRE-EMPT - UBC) successfully organized a symposium on preeclampsia and eclampsia, tagged Pre-eclampsia 2013: A Global Symposium.

As a committed patient advocate on preeclampsia and eclampsia issues, I was at the symposium, sharing my story from the book 283 Nights after I Do to further strengthen the global call for better patient/community and health care worker awareness in the fight to extinct every preventable maternal and/or perinatal death and morbidity caused by pre-eclampsia/eclampsia.

It was sad to know that some health care providers still stuck to the use of diazepam for management of preeclamptic seizure! Do you know one of such providers? Here’s an advice from Dr. Peter von Dadelszen (PRE-EMPT principal investigator) to fellow health care providers: “If your colleague wants you to administer valium, then go ahead, but give the valium to your colleague and give your patient magnesium sulfate (MgSO4).”

Fears related to the use of MgSO4 as preferred drug for preventing and managing eclamptic seizures were debunked by Dr. Jeffrey M. Smith (MCHIP) as he showed reviews which indicated a low incidence of severe side effect (generally 1-2%) directly attributed to use of MgSO4. Indeed MgSO4 is a life-saving, safe intervention.


Moving forward, is there yet a challenge with the use of magnesium sulphate? Perhaps!


Magnesium sulphate comes from manufacturers in different packaging and formulations and this poses a challenge for some health providers who have difficulty diluting the drug and calculating the required dose. These packaging and formulation variants have been identified as culprits in some cases of magnesium sulphate under doses or over doses.


As awareness about preeclampsia and eclampsia rises, we also lend our voices to the global policy makers in drug formulation to provide magnesium sulphate in just one or a maximum of two formulations that facilitate usage and foster acceptability.


A call for joint action: Let’s give life back to those who have been giving life since the human race started!

* USAID – United States Agency for International Development

* MCHIP – Mother and Child Health Integrated Program

[Editor's Note: Marshall Ukpoma's wife died from preeclampsia in 2009 and, since then, he has been a tireless advocate in Nigeria on behalf of our mission to drive awareness and education. This week, he was representing the Preeclampsia Foundation in Kuala Lumpur, Malaysia at the Women Deliver conference, speaking at the Preeclampsia Symposium.]

 
Hits: (151)

Nadine Brunk, a Certified Nurse-Midwife, started a program called Midwives for Haiti (MFH). We’ve been talking to Nadine about how we can extend our work in patient and community education to prenatal care settings like those found in Haiti. I feel like we have much to learn from Nadine, as one minute with her blog will show you. Recently, she shared this amazing story with us.

It was February 5th. The pink Jeep took four midwives to do the monthly prenatal clinic at Saltadere [a town in rural Haiti]. On the way, they stopped at the Birth Center at Thomassique to drop off two nurse-midwives who were going to conduct continuing education with the birth center staff on the difference between chronic hypertension and preeclampsia and the treatment protocols for both.

Thomassique is an hour's ride from Hinche and the road is very rough. Saltadere is another hour east of Thomassique and there is no birth center there. When the midwives arrived, they set up their stations and proceeded to see 26 pregnant women and one who had a negative pregnancy test. One woman was treated with Aldomet for chronic hypertension at 20 weeks gestation. Her blood pressure came down to normal one hour after taking her medication so she went home with a month's supply.

But there were five women who were very sick. They had very high blood pressures related to preeclampsia - the major killer of pregnant women in Haiti. (In 3 of the charts I saw records of 194/120, 208/128 and 154/100.) Two of them were in labor and vomiting. Three were term pregnancies and two were preterm.

So when the Jeep stopped in Thomassique at the end of the day to pick up our midwives, Diane and Marion, they told the driver to "Prese, prese" (hurry, hurry) because they had five high-risk pregnant women to take to the hospital. Two were in labor.

It was a harrowing ride. One of the risks of moving women with high blood pressures is that they will have seizures. Quiet, still, and lying on the left side would be the safest way to transport them. But there was no room in the Jeep for them to lie down and that Jeep ride over that bumpy road is anything but quiet and still.

Diane and Marion found bags for the 2 vomiting women and tried to make others comfortable sitting on the floor with their heads in the midwives' laps. By the time the ride was over everyone on the Jeep was nauseated. The midwives had started IV's on all the pregnant women so that they would be well-hydrated for whatever needed to be done at the hospital. It was the best they could do. They feared the two in labor would deliver on the way and that the others would have seizures from the bumpy ride.

All eventually safely arrived at the hospital and were turned over to the midwives (all MFH graduates) at the maternity unit. Before the night was over 4 had delivered and were still on MgSO4 for severe preeclampsia and two preemie babies were transported to Cange. The next morning the 5th was being induced for being 2 weeks postdate and delivered later that day, still on MgSO4.

The good news is that, although we do not know the outcomes for the babies who went to Cange, we know that the other three babies and all the mothers did well and were eventually discharged. The following morning, two of the women, who were still in the same clothing from the day before, had no family to take them home to Saltadere and no clothing for their babies so Marion paid for their moto-taxi rides home and gave them cloth diapers, onesies, and receiving blankets from the MFH supply closet.

I know this is only one day and one story from Saltadere where the mobile prenatal clinic's monthly trip to Saltadere saved the lives of mothers and babies.

Nadine wants our help: “A graphic-based educational tool to use in rural Haiti about signs and symptoms of preeclampsia would be great. We teach matrones who cannot read and write, and deliver skilled prenatal care to about 500 women per month in the Central Plateau. Haitians respond well to visual learning.”


One of the benefits of the Illustrated Symptoms Tear Pad is its application in a multitude of settings and languages. With some minor language translation and a check on cultural sensitivity, we are eager to equip health care providers in low resource settings with this important patient and community education tool.

 
Hits: (155)

The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

Research Resources

Research Funding Available

JOIN OUR MAILING LIST. We respect your privacy.