Women's Health Living Room Discussions with Secretary Sebelius (Baltimore, MD)
First I just want to thank Linda for letting us all intrude into her home and I know a number of you are going to talk a little bit about your personal history and connection and so I am just delighted to be here and I, I, want to talk to you all about what is going on in your lives and what, what you see coming and make sure that as we think about policy decisions and implementation decisions that we are informed by what is really happening on the ground.
<Robyn Martin> I’m healthy! I have great health insurance through my job. Never really thought that this bill, this law, that I worked a lot on, would really affect me quite as much. And then I got pregnant with my son Jax. Jax is a twin. He and his brother were born in August. In my second trimester I found out that Jax, that our Baby A, was diagnosed with Trisomy 22, which is a genetic disorder called cat eye syndrome and along with that, along with several other possibilities, he had a heart defect. They were born with a C-section and Jax immediately went to the NICU and he spent three weeks there. In this period of time we found out a lot of things Weren’t going to be something we’d have to worry about that was part of this genetic disorder, but the problems with his heart were more severe than they thought - his heart is actually on the wrong side of his body, of his chest, not like - of his chest.
His intestines are backwards, he may have vision problems, he might have cognitive problems, but the heart was the most concerning thing at that time. After 3 weeks they sent him home, to grow and develop so he could be a little bit stronger, for his surgery that he would need. They sent home a fairly listless kind of blue baby. We took him to a lot of doctors appointments, it was very stressful, we had to make sure he wouldn’t cry too much or his heart would stop, we’d have to call 9-1-1, [SECRETARY SEBELIUS - Oh my.] And we have his twin, and two year old sister as well. So it was a very stressful time.
In November we took him for his surgery, he responded immediately - he came out a pink baby. He moved a lot He moved a lot - it was an amazing difference.
[SECRETARY SEBELIUS so when was his surgery?] November 22nd. [SECRETARY SEBELIUS because he looks terrific.]
He does. It is an amazing difference. The life saving care that my son has had has just been amazing and we are very thankful for the care we could get. But - so the ACA affects us in two ways: one of those ways is with the lifetime limits. I don’t know how much all of his health care has costed to this point, but in 5 months, I know it’s got to be a lot. The first day in the NICU was $150,000. If he in 5 months used up the lifetime limit for him, my family would be in really dire straits. He’s going to have to have follow-up visits, potentially follow up surgeries, we would move mountains to pay for healthcare for this child - we’re very glad not to have to. [SECRETARY SEBELIUS - the other thing is he’ll be able to get insurance when he grows up.] Exactly. That was going to be my next point. I love my job, I don’t plan to leave it at any time in the near future, but if I had to stay there until he graduated college, to keep him on my healthcare, that would change things about how much I love my job I’m sure. To know that we don’t have to worry about that for him is an incredibly big deal and it’s a wonderful thing about the ACA.
<Secretary Sebelius> Still the no. 1 cause of bankruptcy in this country so having families not have to think that if they get sick or their child is sick, they will lose everything they work for is a big step forward.
<Alycia Steinberg> On a Friday afternoon in October, I took my 2-year-old, Avey to her pediatrician’s office for what I thought was a minor kid illness. On Monday morning the pediatrician called while Avey and I were out shopping for her big girl toothpaste. Um, the pediatrician had some unexpected lab results. It looks like leukemia. Go directly to the Hopkins ER. In that instant, our lives turned upside down. Avey was in-patient at Johns Hopkins for 24 days where she started intensive chemotherapy for leukemia, the most common childhood cancer. These are Avey’s courage beads, each colored bead represents a treatment milestone. A needle stick or a blood transfusion or a spinal tap.
We are lucky that Avey’s prognosis is excellent. But those first weeks were over-whelming to say the least. We had to learn a new language of leukemia and its treatment, we had to figure out how to explain this terrible new world to our 2-year-old. I watched my little girl lose all her hair. I watched her lose her ability to walk. And I worried that we wouldlose our health insurance. Avey’s hospital stay cost $100,000.
[SECRETARY SEBELIUS - those first 24 days] - those first 24 days. And she has 2.5 more years of chemotherapy ahead of her. Being uninsured is not an option for my family. Our health benefits are provided by my employer, my husband’s a small business owner, I was unsure of my ability to return to work - I thought I had some time to figure things out between vacation time, flex-family-medical leave, but those two things can’t be added together. And my family medical leave was pro-rated because I’m a part time employee. So I burned through family medical leave before I even used my accrued vacation time. My husband’s small business has always offered health insurance to employees, so that’s an option for us. Fortunately coverage of Avey’s pre-existing condition would be protected thanks to the Affordable Care Act. But I worried about continuity of care for Avey, and about affordability for us and for the company.
Would a year of Avey’s claim make health insurance cost prohibitive in the future? Jeopardizing coverage for my family and my husband’s employees? Was COBRA a better option? What would happen when our COBRA ran out? It became an exercise in counting the months and days to see how we could make it to January 2014, when the Affordable Care Act is more fully implemented. And we have more options for coverage. Avey’s responding well to treatment, and I’ve been able to return to work and maintain our health benefits for the time being. But as Avey enters more intensive chemotherapy cycles, our delicate balance could crumble. Childhood cancer is cruel. To have to worry about how your child will get treatment, and how you will maintain your family’s most basic financial security is also cruel. The people in this country need and deserve a better system for ensuring access to health care. When discussing health reform we often talk about our goal of protecting the most vulnerable among us. What we forget is that we are all vulnerable.
<Secretary Sebelius> I bet. Well then I know 2014 is coming but clearly not fast enough and hopefully there will be some security nets in place in the meantime. I mean, boy, it’s a terrible situation for any parent to watch their child be ill, to not be able to fix it, you know, to have that underlying issue of can I get the treatment, can I, what’s going to happen as next step, as you say your husband and his business, it is just incredible, so. Good luck to you [Alycia - thank you] and Avey. It sounds like and her courage beads are impressive [Alycia - they will get longer]That’s better than any general straw, that’s a [Alycia - she’ll have these forever] yeah, I bet.
<Lilyan Lyle> I have to read from my story because I want to make sure I get every important point. My job ended in October 2008, I had 100% major medical, I only had to pay a co-pay of twenty dollars at the most. And all that abruptly ended. I could not afford COBRA. Now I’m at the point where I literally naked with no insurance protection - an unbelievably horrible feeling. Now because I have no degree and I’m [smiles] a little over the hill, and not quite yet ready to retire [general laughter], according to the corporate world, it’s become quite the challenge to secure a full-time position with benefits. Now brings my Cinderella story. I received a letter from the Baltimore Medical System, Miss Ophelia Montague, which is right back here [gestures behind her]. She called me and she asked me if I needed a mammogram. I had no - I was speechless, because I’m sitting there, at my desk most of the day, wondering how I’m going to get this checked up, because the worst fear is not knowing. To be honest with you, I just wanted to cry. Miss Ophelia was able to help me get the mammogram, a follow-up that was needed - a diagnostic that was needed, and the examination at no cost. I’m so thankful and totally indebted to the program. Words don’t seem to do justice for potentially saving lives. I’m glad. It’s a godsend that the Affordable Care Act [flubs word] would allow me to be free from this worry in the future. It’s an honor to be given this platform to be given this platform to speak on behalf of other women and my community with the need and no voice. I agree with the President that healthcare should be a right and not a privilege.
<Mary Vinograd> I’ve always taken health insurance for granted. I grew up as an army brat. And my parents were both military career, so we just thought that’s something you get. So my husband got sick with leukemia, in 2007, and I quit my part-time job to work with him. I did not have any benefits of my own. And I was raising 4 children, 2 of them had launched to college and it was about the busiest time a family could have. One in high school, one in middle school. And we just wanted him to get well. So, unfortunately he did not and he passed away in June of í08. Yeah. He was a senior VP at a securities firm, so we were very covered with benefits and, um, I didn’t know the details of COBRA. But we had it, and it was a great security for me. Until I started paying the premiums for a couple years with no salary, I went back to school in social work. Because I had to build a career for myself, I’m not old enough - I love saying that - to retire. [general laughter] So I have a few more good years in me. So, we go through the change, my daughter graduates from college, she is dropped from the policy, because Obama’s ACA hadn’t come into effect yet - so she has been in and out of policies for the 4 years she’s been out of school. But I started thinking at some point that I needed to get my own policy and get off COBRA, it was expensive and I needed to start conserving, I was living off of life insurance and had no job while I was going to school. So I applied to Blue Cross of Maryland, and got a note back that I was just flat out denied. And I said, what? Do you want to look in my medicine cabinet? I take no medications; I’m healthy, I exercise, I had good primary care my whole life. So at that point I just felt really shaken. That the system had let me down and I just thought, I’m not what I think I am. I’m not healthy. I started having heart palpitations, and I’m 55, and even though I’m healthy, I’d never had an experience like that. And I was terrified to go have them checked. Because, my God, what would happen if I had a heart ailment as a pre-existing condition. So I waited and I waited until all of the forms came through and finally felt safe and I really had to just kind of sit on it for a month. Went to the cardiologist, everything was fine – it was purely just stress. Just stress.
<Secretary Sebelius> Well, it isn’t just purely stress. You know your suffering and still a loss, still tremendous loss but the fact that that security is so shaky for so many people and that really count on it. I mean you talk about your kids. I’ll never forget John, our younger son, had a great friend, who was sick, as a child and when he was nine and ten he is totally healthy at 22, you know was an athlete, was, but because of that illness and because he had graduated and again timed off his parents plan, his father said to me, graduation weekend, I’ll never forget this, he said; you know the good news is Heath has graduated, the bad news is I’ll pay twice as much for his health insurance than I did for his college tuition. And so he said you know, it was a mixed blessing, it was so poignant. We have two and half young Americans now who covered in their families policy up until the age of 26, that just didn’t exist before. Young Americans are the second most likely age group to be uninsured in the country. And you are a car accident or a diagnosis away from a lifetime of bills and bankruptcy, and for yourself and your family; so that’s a huge step forward.
<Lesa Davis> First I like to thank you for inviting me to this round table discussion. I am a homecare provider. Every evening for two hours a day, I care for a 51 year old gentleman, his name is Eddie; and Eddie has severe disabilities, he is home bound, I provide daily services like eating, feeding, bathing, dressing and other activities for Eddie and Eddie lives with his parents, They’re in their 80s, they are very frail and they have their own health care challenges. Fortunately for me, I enjoy taking care of Eddie, and I know that my presence in his home or just caring for him makes a world of difference for him and if and the affordable care act is one of the programs I very pleased to know because it will create home care jobs and will provide services for people like Eddie in the home, allow them to increase their quality of life on a daily basis, so I am very pleased that I had this opportunity to share this at this meeting to let you know how important the affordable care act is to create jobs for home care providers at livable wages, period.
<Secretary Sebelius> When we talk about work force for the future not only needing more primary care docs, more nurse practitioners, more people delivering primary care but the home help work force is so very important to give people those options and those choices and to deliver the services again so you don’t have to have very dramatic choices; I can either be I my house totally independent doing all the things I do or I can totally be dependent on someone else in a nursing home and for a state or a county the cost differential is dramatic, so to have that continuum of care, to have services around for them; we’re really eager to find ways to deploy more home health workers as you say, get people training, and adequate salaries and at the kind of work they need but knowing how really important that is for a healthier system, so you don’t wait until you really get sick, you don’t wait until you get back in the hospital, you really have the care you need on an ongoing basis.
<Sherell Mason> I am a family physician, and I work at a Community Health Center. So I am Kind of on the different side of this. I am a beneficiary of the ACA for multiple reasons. As a graduate from a historically black college in Nashville, Tennessee; I went to Meharry; and they historically received students who are from disadvantaged backgrounds, who may not traditionally go to medical school, and as a result of that I incurred a tremendous amount of debt after school. And so faced with that, National Health Service Corps was presented as an opportunity to forgive some of that debt. And it also afforded me the
opportunity to be able to work in the community where I grew up. [SECRETARY SEBELIUS: that’s great.] So otherwise I may not be able to afford to do that. And so it was a tremendous opportunity for me to be able to serve the community that gave me the support to be able to go to medical school in the first place. And also, you know as a family doctor, you want to be in a position where your patients can come to you. You know we’re in place every day, you know serving the community and providing health care and you don’t want to hear the stories of the patients who can’t come to you because they can’t pay their co-pay, or because They’re in some sort of adversarial relationship with their insurer, or they don’t frankly want to tell you what is wrong with them because of what are the implications for later in the future. So from my perspective I feel like the ACA is good because number one you put the health care workers in place, to be able to receive those patients, and also you allow community medicine to happen. You know, there are so many patients in this country who do not have access to care. And we are in people’s backyards, where patients who don’t have transportation can go to the doctor down the street, so it is a tremendous opportunity to be able to sustain healthcare in the community because it is a necessary vehicle to maintain the health of our community. That’s the goal and I’m very happy to know that we have support in trying to maintain the health of our communities.
<Secretary Sebelius> The National Health Service Core is like the peace core, for doctors and medical providers, and it’s a program that says if you will commit to serve for a couple years in an underserved community, we’ll help with scholarships or pay off debt or to, you know, it is kind of a win, win situation. It is deploying not only physicians, but nurse practitioners and mental health technicians and putting them in the most underserved areas. We have also increased pretty dramatically the number of community health centers, again in underserved areas, some of them are in very rural communities, some of them are in urban areas, or in schools sights or housing centers, where elderly folks live who don’t have transportation but again it is trying to put a framework for primary preventive care in the areas where people maybe far away or not have access to a doctor; it’s a health home and I have been so impressed as I travel around the country. Part of theory was, well, people go to a health center if they don’t have insurance coverage and what we found is that, that is not the case. That about half of the population in a lot of the health centers are people have some insurance coverage, they just see it as their health home, they love the connection and they are really community health centers. So they are in the neighborhoods, their often doing things well beyond health care delivery. They are helping folks find jobs, connecting them with networks, running child care centers; doing a whole series of services that really have to do with health and wellness outside of a physical diagnosis of what may be wrong. But, congratulations, that is really an inspiring tale and it is always great to see some faces behind the statistics that come to my office. Too often not the faces of these great health care providers.
<Jeanine Cogan> In 2009 I was pregnant, so I called my insuranceplan and because I wanted to just check to see if they would cover mid-wivery, because I was having my baby at home with a midwife, and there’s a lot of plans that unfortunately don’t cover midwife service even thought the (?) data is very compelling. So anyway, I call and I’m on the phone for half an hour, 45 minutes, and she’s trying to determine whether I have that covered or not, and she says, Oh actually you don’t have health insurance covered at all for maternity. You don’t have maternity coverage. I said, what? I have maternity coverage. I said, there must be a mistake. She said, no, I have your application here;you didn’t check the box. I said, what box? What do you mean? I didn’t know, I didn’t know that it was an add-on that I had to check anything that actually it would be a higher premium, which she confirmed it would in fact be. So the bottom line, I’m on the phone with her, I said what are my options? How can I [SECRETARY SEBELIUS - you were pregnant?] - I was pregnant. How can I get covered now? I was like, I don’t know exactly when, I was 6 or 8 months pregnant. So the woman on the phone says, well there’s a 10-month waiting period. [general laughter] For pregnancy! I laughed and I said, that’s very convenient.
So I got off the phone I called my insurance broker, and said this is the scenario. So bottom line, it’s a happy ending, I had the baby at home with the midwife, 8 pounds, healthy, it was a wonderful birth, however, the anxiety, the stress, that I had to go through this whole time, grappling with this was completely unnecessary. So I’m so thrilled, and you highlighted this in your comments, that maternity benefits, because of the ACA, and the essential health benefits, will now be required for women. So that’s great, no one else will have to go through this the way I did.
<Secretary Sebelius> Well in the...first of all congratulations on the new baby. [JC: It’s a girl - she is 2 in a few months]ÖI mean that’s great but what you described so many people do every day. I know people who pay out of pocket for services because they don’t want to necessarily access or they don’t want to check that box, they are terrified that they will be sidelined or branded or someone other situation. So getting to the place where the rules are very clear, you know there is no screening trying to identify conditions or and that everybody has access to the market and what companies than have to do is compete on the basis of price and service. What a novel idea, as opposed to who can cherry pick the market and figure out who won’t get sick but that is great that you did an interim step and than by 2014, the new plans with health benefits will cover all of those services for everybody and you won’t have to find a box, you won’t have to, you will know that if this coverage is there and I, you know, I think that one of the challenges is to get beyond a lot of the misinformation that is out and the press and on the TV and have these conversations with our fellow sisters to explain what really is in this act because what I find is when you say to people, you think it is a good idea, that kid is going to be on his parents policy, oh yeah I like that, you think that it is a good idea that we won’t have lifetime limit on benefits or that children shouldn’t be locked out of the insurance market because of, oh yeah I like that. Do you think that it is a good idea that you have ongoing coverage, you would have a choice if you lose your job or leave your job, that it shouldn’t be tied, oh absolutely, well you say that is what itis. Should we have more doctors in underserved areas, should we be training more nurse practitioners and if you lose your spouse should you, should you lose your insurance, well no. So I think once people understand that really is what health reform is. That is what the law does, it is what it says, it is how it benefits you and then folks are like well, I like that, so well than, you actually should be supportive of this; but that you all are so powerful and your voices are so powerful because everybody has, if hasn’t happened to them and their families, they have a friend, they have a neighbor, they have a, and it really makes this between, you know, what is a bill written on a piece of paper to real lives, so the stories and the personal face; you are the face of health reform, and you have counterparts in states across the country, but I just want to; it is so powerful and so important that you tell your stories and nothing is more powerful than what you have done today.
NOTE: The transcript for this program may have been compiled from uncorrected Closed Captioning.