Archive for April, 2010

What IF We Choose Hope

April 30th, 2010

Today is the next to last day of National Infertility Awareness Week. I applaud Resolve® The National Infertility Association for sponsoring a wave of activities including media and advocacy visits to Capitol Hill. The most striking part of this effort, to me, has been Project IF.

Project IF is RESOLVE’s ongoing public education project. The goal is to make sure the public…
• understands that infertility is a disease that affects 1 in 8 couples of reproductive age;
• acknowledges that there are many ways to build a family;
• understands that the disease infertility impacts the physical, emotional, and financial health of those that are facing it;
• knows when to seek the advice of a specialist.

The online abbreviation for infertility is “IF”. And when you’re faced with infertility there are so many “IFs” involved. “What IF we can’t afford treatment?” “What IF it doesn’t work?” The “IFs” are endless… When you’re a friend or family member of someone with infertility there are many IFs you can’t always understand. “What IF we aren’t grandparents?” “What IF my friend doesn’t come to my baby shower?”

These “What IFs” have run through the mind of everyone I know struggling with this issue including myself. Thank you to all the bloggers who have taken up the challenge to expose your personal What IFs to the world towards creating greater understanding, empathy, and action. The best example, amongst many heartfelt and heartbreaking entries this week was Keiko Zoll’s video seen here on her Hannah Wept, Sarah Laughed: Redefining Faith & Womanhood in the Face of Infertility blog.

However, after reading and watching so many of my sisters pulling back the veil of the oft-troubling thoughts that ravage our minds and hearts, I wanted to put forward something a little different.

When I think of how to describe the infertility experience I ask people to picture a roller coaster or a swing. Emotions and moods going up and down. Most of us just want off the ride. So although there are many lows there are also highs and reason’s for hope and that’s what I want to add to this conversation.

What IF . . .
• I end up with not one, not two, but three kids (from 3 healthy singleton pregnancies) like 3 of my friends who went through IVF and then had subsequent natural conceptions
• I get pregnant next month
• All the things that I am doing to make myself the healthiest “vessel” establish life-long habits that enhance my life whether I get pregnant or not
• The meditation classes I take make me a better wife, daughter, sister, boss and business person
• I am a better mother when this is all said in done because I had to learn patience and endurance
• The clarity with which I know that I love my child even now is so powerful it changes the world

Patient Advocacy from the Inside Out

April 12th, 2010

The traditional view of patient advocacy is a group of patients in various stages of a condition – sick, well, wheelchaired, put your youngest and oldest members up front – storming Capitol Hill for photo ops on the steps and protesting outside an office and getting a perfunctory “we support research” from the junior staff before leaving. Surely some long-suffering well-connected heads of patient advocacy organizations and their hand-picked favorite patient are invited to testify at a hearing or opine on a bill as one of 100 in a room at a public session.

If we look closer, though, sometimes patient advocacy has a different look. Sometimes patient advocates are the policymakers themselves. Two recent experiences brought home to me the power of policymakers and key influencers sensitized by their own experiences with facing a life-threatening diagnosis, navigating a dysfunctional health system, and balancing an illness with work, family, and life.

The Honorable Hank Johnson, member of congress from Georgia’s 4th district, gave his support for the HR 3974, the Viral Hepatitis and Liver Cancer Control & Prevention Act at a press conference for the National Viral Hepatitis Roundtable after fighting his own battle with hepatitis C. Mr. Johnson discussed the impact of the legislation not only from an understanding of the statistics, as did his colleague Bill Cassidy, a practicing hepatologist in addition to representing his Louisianan constituency, but from his understanding of the stigma, fear, loss of identity, and perceived lack of productivity and potential.

My second experience in the same week came from a conversation with Billy Tauzin, the soon to retire head of the Pharmaceutical Research and Manufacturers of America. Mr. Tauzin, a former Republican and Democratic member of Congress and instrumental to the passage of Medicare Part D’s drug benefit is credited often as a savvy politician and negotiator. I appreciate how he has put patients’ voices and experiences, including his own, front and center, better connecting the products that the industry produces to the lives they save that anyone else. And he carries this voice and message to places – high-stakes formal and informal negotiations — where it truly matters. His advocacy has an authenticity money cannot buy having originated in a hospital bed, with a dire diagnosis and a medication that restored him to health.

This is not a plea for emotion-based legislation or for everyone to tout their own personal interest above what’s best for the country, but if policymakers are expected to bring their experiences in banking, business, and law to bear on their work, why shouldn’t they bring their experience as patients. While I wish every member of congress good health, I hope that if they do have personal experience with the healthcare system that they channel that into making and supporting relevant, reality-based healthcare policy.