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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 whatís 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 whatís really happening
on the ground.
Iím 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 ñ 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
ìcat eye syndromeî 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
werenít going to be something weíd have to worry about that was part of this genetic
disorder, but the problems with his heart were more severe than they thought ñ his
heart is actually on the wrong side of his body, of his chest, not like ñ 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 wouldnít cry too much
or his heart would stop, weíd have to call 9-1-1, [SECRETARY SEBELIUS ñ 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 ñ he came out a pink
baby. He moved a lot He moved a lot ñ it was an amazing difference. [SECRETARY SEBELIUS
ñ so when was his surgery?] November 22nd. [SECRETARY SEBELIUS ñ because he looks terrific.]
He does. Itís 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 ñ so the ACA affects
us in two ways: one of those ways is with the lifetime limits. I donít know how much
all of his health care has costed to this point, but in 5 months, I know itís 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. Heís going to have to have follow-up
visits, potentially follow up surgeries, we would move mountains to pay for healthcare
for this child ñ weíre very glad not to have to. [SECRETARY SEBELIUS ñ the other
thing is heíll be able to get insurance when he grows up.] Exactly. That was going to be
my next point. I love my job, I donít 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 Iím sure. To know that we donít have
to worry about that for him is an incredibly big deal and itís a wonderful thing about
the ACA.
Still the no. 1 cause of bankruptcy in this
countryÖso 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.
On a Friday afternoon in October, I took my
2-year-old, Avey to her pediatricianís 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 Aveyís courage beads, each colored
bead represents a treatment milestone. A needle stick or a blood transfusion or a spinal tap.
We are lucky that Aveyís 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 would
lose our health insurance. Aveyís hospital stay cost $100,000 [SECRETARY SEBELIUS ñ
those first 24 days] ñ 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 husbandís a small business owner, I was unsure of my ability to return
to work ñ I thought I had some time to figure things out between vacation time, flex-family-medical
leave, but those two things canít be added together. And my family medical leave was
pro-rated because Iím a part time employee. So I burned through family medical leave before
I even used my a crewed vacation time. My husbandís small business has always offered
health insurance to employees, so thatís an option for us. Fortunately coverage of
Aveyís 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 Aveyís claim make health insurance cost prohibitive in the future?
Jeopardizing coverage for my family and my husbandís 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. Aveyís responding well to treatment,
and Iíve 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 familyís 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.
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, itís 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, whatís 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 ñ they will get longer]ÖThatís better than
any general straw, thatís a [Alycia ñ sheíll have these for ever]Öyeah, I bet.
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 Iím at the point where I literally naked with
no insurance protection ñ an unbelievably horrible feeling. Now because I have no degree
and Iím [smiles] a little over the hill, and not quite yet ready to retire [general
laughter], according to the corporate world, itís 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 ñ I was
speechless, because Iím sitting there, at my desk most of the day, wondering how Iím
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 ñ a diagnostic that was needed, and the examination at no cost. Iím so thankful
and totally indebted to the program. Words donít seem to do justice for potentially
saving lives. Iím gladÖItís a godsend that the Affordable Care Act [flubs word] would
allow me to be free from this worry in the future. Itís 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.
Iíve always taken health insurance for granted.
I grew up as an army brat. And my parents were both military career, so we just thought
thatís 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 didnít 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, Iím not old enough ñ I love saying that ñ 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 Obamaís
ACA hadnít come into effect yet ñ so she has been in and out of policies for the 4
years sheís 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; Iím 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, Iím not what I think I am. Iím not healthy.
I started having heart palpitations, and Iím 55, and even though Iím healthy, Iíd 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 ñ it
was purely just stress. Just stress.
Well, it isnít 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. Iíll
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, Iíll never forget this, he said; you know the good
news is Heath has graduated, the bad news is Iíll 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 didnít 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 thatís
a huge step forward.
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, theyíre in their 80s, they
are very frail and they have there 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.
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 donít 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; weíre really eager to find ways to deploy more home heath 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 donít wait until
you really get sick, you donít wait until you get back in the hospital, you really have
the care you need on an ongoing basis.
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: thatís
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 weíre in place
every day, you know serving the community and providing health care and you donít want
to hear the stories of the patients who canít come to you because they canít pay their
co-pay, or because theyíre in some sort of adversarial relationship with their insurer,
or they donít 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 peopleís backyards,
where patients who donít 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. Thatís the goal
and Iím very happy to know that we have support in trying to maintain the health of our communities.
The National Health Service Core is like the
peace core, for doctors and medical providers, and itís a program that sayís if you will
commit to serve for a couple years in an under served community, weíll 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 under served areas. We have also increased pretty dramatically the number of
community health centers, again in under served 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 donít 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;
itís 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 donít 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 deliveryÖthey 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 maybe wrong. But, congratulations, that is really an inspiring
tale and it is always great to se some faces behind the statistics that come to my officeÖtoo
often not the faces of these great health care providers.
In 2009 I was pregnant, so I called my insurance
plan 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 thereís a lot of plans that unfortunately
donít cover midwife service even thought the (?) data is very compelling. So anyway,
I call and Iím on the phone for half an hour, 45 minutes, and sheís trying to determine
whether I have that covered or not, and she says, Oh actually you donít have health insurance
covered at all for maternity. You donít 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 didnít check the box. I said, what box? What do you mean? I didnít know, I didnít
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, Iím on the phone
with her, I said what are my options? How can IÖ [SECRETARY SEBELIUS ñ you were pregnant?]
ñ I was pregnant. How can I get covered now? I was like, I donít know exactly when, I
was 6 or 8 months pregnant. So the woman on the phone says, well thereís a 10-month waiting
period. [general laughter] For pregnancy! I laughed and I said, thatís very convenient.
So I got off the phone I called my insurance broker, and said this is the scenario. So
bottom line, itís 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 Iím 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 thatís great, no one else will
have to go through this the way I did.
Well in the...first of all congratulationsÖon
the new babyÖ[JC ñ Itís a girl ñ she is 2 in a few months]ÖI mean thatís great but
what you described so many people do everyday. I know people who pay out of pocket for services
because they donít want to necessarily access or they donít 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 every body 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 wonít 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 wonít have to find a box, you wonít 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 wonít have lifetime limit on benefits or that children shouldnít
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 shouldnít be tied, oh absolutely, well you say that is what it
is. Should we have more doctors in under served 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 hasnít 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.