Stacie Ritter, Obamacare, and Me

This is a story mostly about what Obamacare means to my colleague and friend Stacie Ritter. But is not just a story about a woman whose family has and will continue to benefit from the Affordable Care Act. Itā€™s also about how the struggle for health care for her family has changed Stacie and made her into one of the most important health care activists in Pennsylvania and in the country as a whole. And itā€™s also a story about me, because in my four years of work as a health care activist and as Director of Health Care for American Now in Pennsylvania no one has inspired me more than Stacie.

Meeting Stacie Ritter

I met Stacie almost by chance in early September 2009. She was scheduled to speak in support of health care reform in Carlisle, Pennsylvania at an event organized by the premier labor and progressive radio talk show host in the state, Rick Smith. The Associate Director of the HCAN campaign in Pennsylvania, Gregg Potter was supposed to speak at the event as well.Ā  But, at almost the last minute, Gregg called to tell me that something else had come up and he couldnā€™t make it. So I decided to do the two hour drive from Philadelphia to Carlisle and take his place.

I decided to go in part because thatā€™s the kind of thing we were all doing in the most heated part of the campaign, when we were fighting back against the Tea Party attack on health care reform. The Tea Party got all the attention. But we at HCAN had mobilized thousands of Pennsylvania activists to show their support for health care reform. At 39 of 43 Congressional Town Halls around the state we had substantially outnumbered the Tea Party activists. We burst the bubble of the tea party in Pennsylvania by showing them, and members of Congress, that a majority of Pennsylvania demanded reform.

Now we were planning to fight back, taking the attack directly to the insurance companies. One of the largest insurance companies in the country, CIGNA, was based in Philadelphia and was the target of a major ā€œBig Insurance: Sick of Itā€ rally we had planned for late September. I had spent much of the day looking for a CIGNA policy holder who had been harmed by the company and who could speak at the rally. My problem, however, was that as big as CIGNA was nationwide, it did little insurance business in Pennsylvania because the Blues had bottled up the market. So another reason I got in my car at 5:00 pm was that I was glad to get out of my office after a frustrating day looking for someone with horror story about CIGNA to speak at our rally.

I got to Carlisle a little bit before I was supposed to speak in one of those old, formerly grand, movie theaters that still survive in small cities all over the country. After taking questions, I sat down in the second row and listened to the next speaker, a young woman named Stacie Ritter. Stacie told a multi-generational tale of health care problems and insurance company abuse. It was moving in parts. But between all the details of Stacieā€™s story and my exhaustion after the long day and drive, I started to nod out. And then as she got to the end of her long story, I heard Stacie say the word ā€œCIGNAā€ and I shot up, wide awke.

I had missed some of Stacieā€™s speech. But I grabbed Stacie after the event and we talked about her story. And she quickly understood me when I said it was a powerful story but that she needed to focus on certain key parts of it if it was going to effective in moving people to support health care reform.

We talked a few days after and Stacie edited her long story into the moving tale she has since told to rallies and Congressional hearings in both Pennsylvania and Washington, DC.

Stacieā€™s Story

At the age of 4, Stacieā€™s twin daughters Hannah and Madeline, were diagnosed with leukemia. Long and difficult treatments, including stem cell transplants, saved their lives, but at great cost to Stacieā€™s family. Her husband Ben had good insurance at work but had to take family leave to care for his family. The premiums and co-pays under COBRA were so high that they wound up with $30,000 in medical debt and were forced to file for bankruptcy in 2003.

Madeline and Hannah survived, but the glands controlling their growth were damaged by the treatment. Their doctor, the author of a pediatric textbook and one of the leading pediatric endocrinologists in the country, recommended that the twins receive daily growth-hormone injections. But Benā€™s company had switched to CIGNA for health insurance, and CIGNA refused to cover the hormone shots, calling them experimental. Eli Lilly was willing to give Hannah and Madeline their growth hormone drug free. CIGNA only relented after when Stacie became a spokesperson for health care reform and spoke publicly about their failure to provide the care my kids needed. So now they pay CIGNA $140Ā for a 3 month supply of the medication.

How Obamacare would have helped the Ritter Family

Had the Affordable Care Act been in place when Hannah and Madeline were stricken, Ben and Stacie would have been able to purchase affordable health care with good benefits and low co-pays after Ben went on leave to take care of his family. Had the ACA been in effect when CIGNA denied Madeline and Hannah human growth hormone, they would have been able to appeal that decision. And, most likely, they would have won that appeal. A provision in the law prohibits insurance companies from limiting or denying coverage to individuals participating in clinical trials.

Why the Ritter Family Still Need Obamacare

The ACA may have been too late to help the Ritter family deal with these problems. But it addresses many of Stacieā€™s biggest fears for the future:

Given their medical history and pre-existing conditions, before the ACA was enacted, Hannah and Madeline would have always found it difficult to secure affordable health insurance. Obamacare eliminates that worry.

Cancer survivors like Hannah and Madeline need expensive preventative and follow up medical care. Obamaca requires health insurance plans to provide these services without copayments, deductibles, or coinsurance.

And if Hannah and Madeline were to face a a recurrence of cancer, the treatments could be so expensive that they would run up against annual and lifetime limits on care. Ā Obamcare ACA eliminates those limits.

Hannah and Madeline Ritter will lose all of these benefits if Obamacare is declared unconstitutional by the Supreme Court.

Learning to fight and win

The I remain confident that this is not how the Supreme Court will rule. But, even if it does overturn the Affordable Care Act, it will not undermine the movement for health care reform. The ACA gave people like Stacie security and hope that they never had before. But it also changed them. It taught Stacie and thousands of others what a long, hard political struggle looks like. It taught them to fight and to win.

Stacie was involved with that struggle long before I met her. In the fall of 2008, she read the part of Barack Obamaā€™s health care proposal about cancer patients and research to Hannah and Madeline. One began to cry and said, ā€œMom, Barak Obama really understands. He is really going to help usā€.

Stacie started speaking out then. And after we met, she became a critical part of the HCAN campaign both in Pennsylvania and in the country as a whole.

On September 22, 2009 she spoke at that rally in front of CIGNA insurance that I was so worried about the day I met her. A week or so later I visited Stacie, Hannah and Madeline and we made a video about her situation and her threat to visit CIGNA CEO Ed Hanaway at his home. Soon after we Hanaway a visit and made another video that was seen around the country. Then in October, Stacie spoke at a rally in front of CIGNA where five of us were arrested as we blocked the door to the companyā€™s headquarters.

She didnā€™t stop there. She took her story to Democracy Now and to Dylan Ratiganā€™s Show. Stacie testified before members of Congress before the ACA was enacted and on the first anniversary of its passage. And last week she stood on the steps of the Supreme Court to tell her story once again.

The fight for health care reform has made Stacie not only an accomplished speaker but a leading political activist in Pennsylvania. And she is not alone. Stacie one of thousands of activists in Pennsylvania who worked week after week for 18 months to see the Affordable Care Act through Congress. Sheā€™s also not the only one who, after suffering at the hands of insurance companies, has stood up to say that she is determined that no one else ever suffer as her family did. People like Maureen Kurtek, who was hours from death before insurance company relented and allowed her to have a new treatment for lupus, and Georgeanne Koehler, whose brother Billy died because he did not have insurance to cover the replacement of a battery for his pacemaker, and many others have done so as well.

But no one has put more effort into the fight the Stacie or inspired me and other activists in Pennsylvania and Washington more with her energy and fight.

And Stacie did one other thing for me, help me deal with my own unease about using stories like hers in a political struggle. We were meeting one day when I got a call from one of our staff members about another woman who had suffered horribly at the hands of an insurance company. I got off the phone and told the story to Stacie who said, ā€œThatā€™s a great story. We can use that one.ā€ I start laughing and said, ā€œAll these months Iā€™ve felt a little guilty about exploiting the suffering of your family for a political struggle and now you go and say that.ā€

Stacie laughed for a minute and then turned serious and said, ā€œDonā€™t you know that this struggle to reform health care in America is the only thing that made Hannah and Madelineā€™s suffering seem like it had a point? Never be afraid to ask me or anyone else who has suffered to speak out on behalf of those who will suffer as we did if we donā€™t reform health care now.ā€

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