WASHINGTON ― Much of the deliberation over the Senate’s bill to repeal the Affordable Care Act is taking place behind closed doors. Key senators have yet to make their views heard. Some have sought to avoid reporters’ questions about the bill. Senate Majority Leader Mitch McConnell (R-Ky.) had hoped to vote on the legislation without so much as a single hearing.

But with the nonpartisan Congressional Budget Office analysis showing that the bill could mean at least 22 million Americans will lose their health insurance ― including 15 million in the first year that the legislation goes into effect ― the debate is shaping up over our health care system. In rural communities, patients are asking their doctors what they should do when they lose their insurance. Doctors are worrying about their future, too. Here, in their own words, a lawyer, an administrator, a midwife and two doctors describe the effect of the Affordable Care Act and their fears of what the Senate bill would mean.

A lawyer in Covington, Kentucky, who helps enroll people in health insurance as part of the Affordable Care Act

With the ACA, it was exciting to have such good news for people. And it was exciting even though I was going into places where people didn’t want Obamacare. It was still easy because it was such good news for people. All I had to do was talk to them about what they were eligible for. There’s an option for almost everyone now. It was like spreading good news. I told people I got to be Health Care Santa Claus.

I signed up over 100. I did a lot of presentations where I answered questions and I referred people to local Kynectors [those who sign up Kentuckians for the health care exchange].

One person in particular will forever blow my mind ― one of my mom’s tenants. His name is Cecil. Cecil is one of my favorite stories. I enrolled him in coverage. He’s a lifelong alcoholic, 40-plus years of not being sober at all. We got him signed up. Never had health insurance as an adult. He was 63 when I enrolled him.

I was shocked, I struggle to come up with words when I saw him and he told me he had his [insurance] card. Just having the card, just knowing that he mattered.

Being able to make an appointment changed so much about his life. He could plan ahead. He had a card that said he had value. For the first time since I’d known him, he got sober. And he got a little part-time job working on a barn somewhere. It really changed him. It changed the way he carried himself. He’d always tell me when he made an appointment. He was really proud he could take responsibility for himself and make an appointment. He was really proud that he had his doctors. He got himself heart medicine for an untreated heart condition, and blood pressure medication for his high blood pressure. It changed the way he moved through his life. It changed the way he talked about himself. He made plans to see his son in Tennessee, and in the years I’d known him he’d never done that. It makes me cry every time I think about him.

With the Senate bill now, there will be nothing for Cecil. He wouldn’t be able to afford any private plan. It would be terrifying. The last year what has been really hard about talking to people ― I don’t’ know if there’s good news for people. I don’t know what news I got for people. You lose people a minute in ― they’re like, I guess it’s gone. I can’t definitively say it’s going to be OK.

Executive director of Cabin Creek Health Systems in Kanawha County, West Virginia

Our nonprofit organization has five health center sites in Kanawha County. Our sites are mainly outside of [Charleston] in small towns and rural communities. Our health centers are available to anybody regardless of ability to pay. We treat people from all parts of the community ― teachers, professionals as well as uninsured folks and people covered by Medicaid and Medicare. We take care of people from infancy to old age. We provide medical and behavioral health services and dental services.

A lot of our patients had been uninsured before the Affordable Care Act, and now they have insurance for the most part. The percent of people without insurance was between 20 and 25 percent before the ACA, and now it’s somewhere around 3 to 4 percent, so it’s been a huge change in access to care for people who are formerly without coverage. We had a discount program, so there weren’t financial barriers to care, but there were barriers to care for specialty care and more advanced diagnostic services.

It’s been a new world for us as providers and for our patients to have financial access to really the standard of care now. So it’s been a wonderful thing to see. People who were formerly uninsured now felt free to come in. Even though we had a very low co-payment requirement, it was still a barrier. It was a barrier because people didn’t feel like they should be coming. When they got coverage, we discovered many people with chronic conditions that they didn’t fully appreciate. People who had been struggling became stabilized. Emergency room visits were averted. And people were able to function at a better level.

It allowed us to stabilize our finances and allowed us to create a decent reserve to provide longer-term stability. But more immediately we were able to expand services, expand the number of providers, expand the number of behavioral health services, initiate an addiction treatment program. We actually got a grant through the ACA for developing primary care facilities and were able to get a grant to replace a clinic that burned down. That clinic just opened six weeks ago.

Of course, we spent a lot of time trying to figure out what the House bill meant for us. The Senate bill, it turned out, is not any better. What it clearly will mean for us is almost all of the people ― over the next five or six years ― almost all the people who received care through the Medicaid expansion part of the ACA will lose that coverage. The state doesn’t have the funding to maintain that coverage without the federal support. That will go away. There’s just no doubt about it.

It’s going to be harder for people to get the medications that they need. We’ll be back to the situation where they will be faced with either avoiding care that they need or going into bankruptcy. It’s going to revert to the dark ages of American medicine. Health care will be essentially denied to people ― that’s both preventive care and acute care. It’s a significant burden for people who are already in a marginal financial situation, for whom an illness or an injury can mean that they slip over the edge into a situation that they really have a hard time getting out of. It’s really tragic.

There’s no doubt about it we would have to downsize. Our estimate is we would have to probably lay off more than 20 people. Our staff is now about 130 for those five health centers.

I worry about that 200,000 West Virginians who are going to lose coverage over time. I worry about the fact that the way the timing is set up, it appears as though they want to postpone the real misery until after the next elections. I worry about the fact that these impacts will not be understood until they’ve actually occurred. And I worry about the health care system that I’ve been involved with for the last 40 years. I know it will be degraded as a result, and I’m concerned that it will be something that will be really hard to recover from.

A certified nurse midwife in Lexington, Kentucky. Forty percent of the patients she sees are on Medicaid.

My biggest concern is birth control and access to long-acting contraceptives ― if those are going to be covered by insurance. Also the breast pumps, because under Obamacare pregnant women are able to get breast pumps covered.

What we see is [uninsured] women just don’t come in until later in pregnancy. They will use the ER, they will say they are having some bleeding and they will get an ultrasound ― that’s commonly known. I’m worried that we will see an increase in emergency room use for prenatal care. That’s going to be the new norm. They’re just going to the ER because what can we do?

We are doing a huge disservice for the majority of people in Kentucky whether they are poor, whether they are refugees, whether they are women and happen to have ovaries. And thinking in terms of my parents, that baby boomer age, they’re probably going to be paying more. For everybody, I’m worried ― but specifically poor pregnant women. If pregnancy is a pre-existing condition, how can that be? My main reaction is disbelief. Of course, here I am in Mitch McConnell Land.

An OB-GYN in Owensboro, Kentucky

The first thing is that I have patients that are now covered under insurance that couldn’t get insurance previously because of pre-existing conditions. Something as simple as an abnormal Pap smear that wouldn’t require further treatment would sometimes make that person have a pre-existing condition.

If you have a uterus, you would be considered to have a pre-existing condition. [Before the ACA], most plans didn’t have maternity coverage. I would have patients who would have insurance that would get pregnant, assume that they would have coverage and find out that they didn’t have coverage. That not only happened frequently, that happened to me.

I was a partner in my practice. I never thought I wouldn’t have maternity coverage. I got pregnant and found out that I did not have coverage. Fortunately, I was able to be added to my husband’s plan.

And now maternity care is an essential health benefit.

Obviously, with [the Senate bill], states will have the option to do away with the essential health benefits. And Kentucky would request a waiver [to drop them]. Absolutely.

It absolutely makes no sense from a public health standpoint. We know that maternity care improves outcome. So why would they want to get rid of it? I don’t know.

Essentially, we could face an epidemic of woman having to pay out of pocket for maternity care. Or maybe they have an extra $17,000 that they can add maternity care to their policy.

That’s what used to happen ― you just didn’t get maternity care. When they don’t have any insurance coverage or Medicaid, they get maternity care by going to the emergency department. It doesn’t work for prenatal care. That‘s what I would see us returning to.

The other thing that really worries me is the elimination of preventive screening benefits. No more yearly pelvic exams. Patients wouldn’t get their Pap smears on a yearly basis. They wouldn’t get mammograms. They would come in with more advanced-stage breast cancer if they aren’t getting mammograms. Before Obamacare, diagnosing later-stage cervical cancer and later-stage breast cancer was more common than it is now.

I think that the general public has no idea what the benefits of the ACA or Obamacare have been. All they’ve heard is the rattling of the Republican Party for the last seven years ― that we have to repeal this horrible health care bill. I’ve personally had patients come in that have no idea that they have coverage now because of the ACA, and all they want to do is repeal Obamacare. I would say, by and large, the public has no idea what the Senate bill is, what it actually means. I think there’s a misconception that Medicaid is only for deadbeats. The general public doesn’t understand that 50 percent of Medicaid recipients are children.

The Medicaid expansion is what I’ve seen make the biggest difference in my practice. I see patients come in with Medicaid, and they are working, their husbands are working, and they still don’t make enough money to pay for insurance on the market. Now they get coverage, whereas before they would go bankrupt or go without care.

I do try to explain what the benefits are and if Medicaid goes away what it means. I don’t have a lot of patients on Medicaid who complain about it. I mean, they are finally getting health care.  

In this country, if you don’t have insurance, you don’t really get health care because it’s so cost-prohibitive. If we go back to the time where people have to pay for their preventive care, they don’t come. Diabetes doesn’t hurt until you lose a foot.

An addiction specialist at a clinic in Fort Collins, Colorado. The majority of his patients are being treated for an addiction to opioids. McCoy uses buprenorphine (commonly sold as Suboxone) to treat his patients.

When I read the report about the Senate bill’s CBO score regarding 22 million people losing insurance, I was disgusted and it made me want to throw up. This isn’t hyperbole. I know when they are talking about the people that are going to lose insurance ― I know it’s my people. My people are at the margin here. Those are the people that are going to be cut first.

Most of these people have young families. There are children at home. One or both of the parents suffer from addiction. They’re working hard at getting better. But they have had some misfortune in life. They need and deserve the help with this medical treatment. But the way it’s characterized, it’s lazy people that are freeloading off the system. They are working ― mostly fast food, retail, construction. Jobs that really don’t pay a living wage or offer insurance. A lot of them are seasonal employment. Sometimes they make OK money. Sometimes they have nothing.

When you look at the people I treat here, it’s primarily Medicaid and primarily addiction. When you sit and talk to them, what you really find most in their past is trauma ― some type of past trauma that has sort of set them on this course. That’s not personal responsibility. It’s a death in the family. It’s sexual abuse as a child. It’s untreated mental illness. They’re trying to self-medicate. They have bipolar disorder, and the only way they know to manage things is to use drugs.

We’re pleased that we made the step to take Medicaid. We’re sort of all in with Medicaid right now. For our practice, the Medicaid expansion has allowed us to offer care to probably two to three times as many people as we would have been able to reach previously. I just had a patient the other day, I asked him what he did before. He said he would just go to the emergency room and get patched up and sent on his way. And all that time never being treated for the underlying problem, which was addiction.

We have 70 percent Medicaid and 30 percent underinsured. I can count on one hand the number of people who are financially secure. Are they just going to start cutting people off Medicaid? Are they going to stop covering Suboxone? Are they going to stop covering addiction care?

There’s a sense of unease for sure about what’s going on. Just like me, [my patients] don’t maybe completely understand it. But they do understand it’s not good for them, and I have had clients talk to me about emergency plans, tapering off their medicine. Those things are very real to them. Probably a couple times a day, somebody will ask me what I think is going to happen: How should I try to get ready in case they take my Medicaid away?

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