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Medicare To Experiment With Tying Drug Costs to Effectiveness

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Medicare wants to experiment with tying the prices it pays for medication to effectiveness.

Medicare wants to experiment with tying the prices it pays for medication to effectiveness. iStockphoto hide caption

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Aetna and Cigna inked deals last month with drug maker Novartis that offer the insurers rebates tied to how well a pricey new heart failure drug works to cut hospitalizations and deaths. If the $4,500-a-year drug meets targets, the rebate goes down. Doesn’t work so well? The insurers get a bigger payment.

In another approach, pharmacy benefit firm Express Scripts this year began paying drug makers a special negotiated rate for some cancer drugs. The goal is to reward the use of medicines that are most effective for certain cancers.

Dubbed “value-based pricing,” these are the kind of private-sector efforts the Obama administration hopes to borrow to rein in drug prices for Medicare.

The results could lead to a profound shift in how the Centers for Medicare & Medicaid Services spends $20 billion a year for drugs under Part B, which are those given through doctors’ offices and hospital outpatient centers. Many cancer treatments are provided that way, as are some treatments for rheumatoid arthritis, macular degeneration and other medical conditions.

Under a proposed rule, different methods would be tried in selected geographic areas over a five-year test period. Some of these experiments would begin this year, with others added in 2017. The proposal faces two months of public comment.

“The goal is to test whether alternative approaches will lead to better value,” said Patrick Conway, chief medical officer for CMS, in announcing the proposal March 8.

“There is no perfect payment system, they all have upsides and downsides,” said Dan Mendelson of consulting firm Avalere Health, who lauded Medicare for considering new ways to pay even as he cautioned that it must be done carefully. “What we don’t want to do is create a world where doctors only prescribe the cheapest stuff even if not in the interest of the patient.”

Here are four concepts the government is investigating:

Cut add-on fees for doctors and outpatient centers.

Many drugs covered under Medicare Part B are first purchased by a physician office or outpatient center, then dispensed to patients. Once billed, Medicare pays the health care provider the average sales price plus 6 percent for costs associated with the purchase and storage of the medications. For example, a doctor or clinic would receive an add-on fee of $6 when a $100 drug is purchased, or $300 for a $5,000 treatment.

In the private sector, that practice – called “buy and bill” – is being reduced.

Instead, specialty pharmacies, often connected with pharmacy benefit management companies, purchase the drugs and deliver them to doctors’ offices. The management companies, paid by insurers for their services, negotiate prices with drug makers.

But the buy-and-bill approach still dominates Medicare Part B.

Oncology specialists and other proponents say add-on fees are an important revenue source needed to keep such centers open. But critics fear they encourage use of higher-cost drugs when equally effective products could be had for less. They also say the fees reward larger practices and centers that buy drugs at advantageous prices.

To counter that possibility, CMS would change the current reimbursement formula, cutting the add-on portion to 2.5 percent of the average sales price.

Recent industry surveys show that larger practices have resisted moving away from buy and bill. Smaller ones with less bargaining clout favor that. Drug makers and some physician specialty groups oppose this part of Medicare’s proposal, but patient advocacy groups express mild support mixed with caution.

Level payments.

In the private sector, insurers sometimes set caps on payments for services patients generally can shop around for, such as a hip or knee replacement or colonoscopies. The California Public Employees Retirement System insurance plans, for example, saw that the cost of joint replacements varied widely among hospitals, then set a cap of $30,000 for a joint replacement. If patients chose hospitals that charged more, they had to pay the difference. The move was credited with saving millions in its first two years. Most of it came from the more-expensive hospitals lowering prices.

Medicare plans to apply this model to its payments to doctors and outpatient centers for some categories of medicines. For example, it might select one price for all injectable treatments for knee pain caused by osteoarthritis. The same rate would be paid, even when centers use higher-cost products.

The question is how to set that price. While asking for comments, Medicare suggested a variety of options, including the average price for drugs in a category, the price of the most clinically effective drug or a rate developed some other way.

Medicare’s proposal would apply to some prescription medications, but not procedures. And unlike most private-sector models, Medicare patients who get drugs above a benchmark cost could not be billed for the difference. The goal is not to encourage patients to change drugs. Instead, Medicare said it will test whether grouping similar drugs into a single payment rate will give physicians incentives to use “products that provide the most value for the patient.”

Tie payments to effectiveness.

Under Medicare’s proposal, drug makers would agree to offer rebates that link the final price of their products results in patients. Just what those results would be – improved health, fewer hospitalizations or some other measure – would be spelled out up front. There are more than 300 such “risk-sharing” agreements currently in place in the private sector, according to a University of Washington School of Pharmacy database.

In a related test, Medicare would adopt an approach similar to that used by Express Scripts, varying the amount of payment based on a patient’s condition. Drugs are often approved for more than one condition – say, two different types of cancers – but may be more effective at treating one than the other. Under the proposal, Medicare would pay a physician less when a drug is less effective on that cancer.

Skeptics say the process can be complex, and savings might be eaten up by administrative costs or disagreements over whether drugs have met effectiveness targets. Moreover, these private sector efforts are so new that detailed results are not yet available.

Meanwhile, a report out Tuesday from the Institute for Clinical and Economic Review looked at similar efforts internationally. It found that such “indication-specific” pricing holds some promise, but cautioned that administrative complexity and other challenges are significant.

Cut patients’ out-of-pocket costs.

To get people to take essential medications such as statins after a heart attack, some insurers, including Aetna, have reduced or eliminated patient copayments. Other insurers have experimented with similar incentives for other conditions, such as asthma or diabetes. They generally found that reduced payments make patients more likely to continue taking their medications.

In Medicare Part B, patients are responsible for 20 percent of the cost of their drugs unless they have a supplemental insurance policy that covers such copayments. Medicare proposes to cut or eliminate those payments for certain drugs considered most effective or valuable.

Lower copayments might affect what doctors prescribe and could encourage patients to stay on needed treatments. Medicare itself would make up the difference, picking up the tab for the reduced or eliminated patient payment.

Medicare is soliciting suggestions in its public comment phase as to which drugs might be the best candidates for the test.

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CDC Has Advice About Opioids For Primary Care Doctors

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When it comes to chronic pain relief, the CDC is asking doctors and patients to think about alternatives to opioids.
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When it comes to chronic pain relief, the CDC is asking doctors and patients to think about alternatives to opioids. Robin Nelson/Zumapress.com/Corbis hide caption

toggle caption Robin Nelson/Zumapress.com/Corbis

In response to the opioid epidemic that has swept the country, the Centers for Disease Control and Prevention released long-anticipated guidelines on prescribing opioid painkillers such as OxyContin and Percocet.

They were published Tuesday in JAMA, the Journal of the American Medical Association.

The advice is aimed at primary care physicians, who prescribe nearly half of the opioid painkillers consumed in the U.S. The guidelines aren’t intended for doctors treating cancer patients or for end-of-life care.

The guidelines sparked controversy when a draft was released in the fall. Some pain specialists and patient advocates cited a lack of evidence supporting many of the recommendations. Critics voiced concern that the guidelines could result in patients being denied pain relief they legitimately need.

NPR’s Robert Siegel spoke with Dr. Debra Houry, director of the Centers for Disease Control and Prevention’s National Center for Injury Prevention and Control, who’s been involved in the development of the guidelines from the beginning.

Here are interview highlights, edited for length and clarity.

On how Houry hopes the guidelines will change the way doctors treat pain

I hope this will allow primary care providers to have a conversation with patients about the risks and benefits of opioids and to consider non-opioids as the first-line treatment for pain.

The doctor can tell you that up to 1 in 4 patients with chronic pain can experience opioid dependence. A family history of addiction, mental health issues and other chronic issues can put you at higher risk.

On the potential pushback from people in chronic pain

What I would say is, let’s try some other options first. Let’s try a high dose of a nonsteroidal [anti-inflammatory drug], let’s try an SSRI-type medication, let’s try some of these other medications first and maximize them. We absolutely want to treat your pain, but we want to do it safely. And opioids may be warranted. … If opioids are warranted though, we’re not saying to use them in isolation. They should be used in combination with things like exercise therapy or nonsteroidal medication.

Critics, including the American Academy of Family Physicians, faulted the CDC’s initial recommendation that opioids should not be first-line therapy for chronic pain, saying that’s too strong a stance given the weakness of the evidence.

Well, I think there is weakness [in evidence] on the benefits of opioids but there’s been significant progress on the risk of opioids. We see that there is an increased risk of car crashes, death from overdose. And that’s why we have decided that because of that, and the uncertain benefits of opioids, that continuing to prescribe them for chronic pain is not warranted. On the other end, non-opioids, there is evidence for their benefits.

There is room for more science as we continue to revise and update the guidelines, but given the number of Americans dying each day from opioid overdoses — 40 a day — we have enough evidence today about the risks. That being said, I can tell you as a practicing physician that many guidelines I use are often based on low-quality events, and that doesn’t mean bad evidence. That just means there are not a lot of randomized controlled trials.

On criticism of the initial recommendation to limit prescriptions for acute pain to three days

So we heard that feedback, and for that specific recommendation there is now a range of up to seven days. We want to make sure patients have appropriate access, but we also want to limit the number of patients who become addicted, Having too many days of medication can put you at risk for addiction, so we do think it is important to give the shortest course possible.

Response to the concern over the low starting dose recommended

We’ve actually put a range in there. At 50 morphine milligram equivalents [a standardized measure of potency], we say that you should assess the risks and benefits. And at 90 you should really think hard … consider referring them to a pain specialist. This is for initiation of opioids. We do not think that an opioid-naive patient — someone who hasn’t been on opioids before — should be started on a high dose of opioids. We have seen that the higher the doses of opioids, the more likely you are to overdose. So we believe in starting low and going slow.

What should doctors tell people who suffer chronic pain and are on opioid therapy now?

It would include having that conversation about the risks and benefits. With the newer evidence we know about the risks, I believe every patient should be aware of the risks and benefits of their treatment. And I do think physicians should routinely monitor their patients and reassess them. If a patient is doing fine on a low dose, we’re not saying to change that care. But if a patient is not improving in function or is having adverse events, I think they should reconsider what medication they’re on.

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Patients Leave The Hospital With Superbugs On Their Hands

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It's not just medical personnel who should be washing hands to reduce the spread of germs. The patient should be, too.

It’s not just medical personnel who should be washing hands to reduce the spread of germs. The patient should be, too. iStockphoto hide caption

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Encouraging doctors and nurses to wash their hands frequently has always been considered an effective way to curb the spread of infection in hospitals and other health facilities.

But a research letter published Monday in JAMA Internal Medicine points to another key group of people who aren’t always keeping their hands so clean and probably should: patients.

Researchers focused on inner-city Detroit and looked at patients who went from hospitals to post-acute care facilities — places like rehabilitation centers, skilled-nursing facilities, hospice and long-term care hospitals. They found that almost 1 in 4 adults who left the hospital had on their hands a superbug: a virus, bacteria or another kind of microbe that resists multiple kinds of medicine.

While in post-acute care, about 10 percent of patients picked up another superbug. Of those who had superbugs, 67 percent still had them upon being discharged, even if they hadn’t gotten sick.

These findings add to a growing body of research about hand hygiene and the patient’s role in infection transmission, and speak to a problem with health care facilities — they can increase the odds of getting sick.

The paper’s authors suggest so far underused strategy for addressing that concern: getting patients to wash their hands.

Conventional wisdom has long held that doctors and nurses who go from patient to patient are most likely to transmit germs. As a result, few health care settings really make patient hand-washing a major priority, said Leah Binder, president of the Leapfrog Group, a nonprofit organization that grades hospitals on patient safety.

The paper, she said, “really requires an immediate response” from safety advocates.

“We have to revise hand hygiene policies to include patients. One of the main strategies on hand hygiene is to make it easy to wash hands,” she said. “Most hospitals have either sinks or dispensers near the door of every room, so that it’s very easy for a provider walking in to immediately wash their hands. Do we make it easy for patients to wash their hands? I doubt it.”

Beyond that kind of architectural change, signs should be visible around facilities to remind patients about hand washing, she said.

But just because patients are carriers of superbugs doesn’t mean they will get sick, said Lona Mody, a professor of internal medicine at the University of Michigan-Ann Arbor, and the study’s corresponding author. There needs to be more research to measure the relationship between carrying germs and falling ill, she added.

If you have superbugs on your hands, though, you probably have them elsewhere, too — in your skin or in your gut, said Louise Dembry, president of the Society for Healthcare Epidemiology of America and a professor of medicine, infectious diseases and epidemiology at Yale. Having them on your hands makes them easier to spread.

Plus the patients in these kinds of facilities are, almost by definition, more vulnerable to infection, Binder said — they’ve just come out a hospital where they needed a high level of care.

“I find it not difficult to imagine” that a number of these patients will end up with serious infections, she said.

Spreading germs is also easier to do in post-acute settings, Dembry noted, since patients are more likely to interact with each other. Patients are encouraged to move around more and, as a result, more likely to touch medical equipment and furniture, among other things, which can spread the germs, Mody said. Overall, these circumstances increase the odds of transmitting germs and up the need for better hand-washing protocols.

Dembry added that hand washing can be only one part of any strategy to prevent infection. Medical tools and machines need to be kept clean. Culturally, patients should feel comfortable asking each other if they’ve washed — and steer clear if they might be infectious.

As health care facilities are increasingly evaluated on how well they care for patients, they should be rewarded for things like promoting clean hands, Mody said.

For instance, “if an institution has a program that enhances patient hand hygiene, the quality of that place should be considered higher,” she said.

This story was produced as part of a partnership between NPR and Kaiser Health News, an independent health journalism organization.

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For Divorced Couples, Separate Plans OK To Repay Health Law Tax Credits

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Man and woman separated by twisted path. Gary Waters/Ikon Images/Corbis

Gary Waters/Ikon Images/Corbis

This week, I answered questions from readers about Medicare coverage and the rules for repaying premium tax credits for marketplace coverage after a divorce.

I have insurance through my federal employee retirement plan. Why should I pay an additional monthly premium for Medicare Part B?

Whether as a federal retiree you should sign up for Medicare Part B, which covers preventive care and services such as doctor visits and lab work to treat medical conditions, depends on your own preferences and priorities, said Casey Schwarz, senior counsel for education and federal policyat the Medicare Rights Center, an advocacy group.

You have options. Unlike many private retiree health plans, your federal retiree plan will continue to be the primary insurer if you decide not to enroll in Medicare Part B, Schwarz said. In contrast, many private retiree plans “wrap around” Medicare Part B coverage, providing secondary coverage for things Part B doesn’t cover. If a retiree doesn’t sign up for Part B, those plans may not provide any coverage at all or may only pick up the 20 percent coinsurance that’s generally charged beneficiaries for Part B services, said Schwarz.

So if you’re pleased with the benefits your federal retiree plan provides and the amount of flexibility you have to make changes, you don’t have to sign up for Medicare Part B in order have coverage for those benefits. (In general, people should, however, sign up for Medicare Part A, which covers hospital benefits and typically costs beneficiaries nothing.)

The other consideration is the Part B penalty. If you don’t sign up for Medicare Part B when you’re first eligible — typically at age 65 — you’ll have to pay a late enrollment premium penalty of 10 percent for every year that you could have enrolled but didn’t. If you’re still working at age 65 and you have regular employee insurance coverage, you won’t face a penalty until your work or insurance ends.

If you’re sure that you’ll never want Part B coverage, then you can save the monthly Part B premium, typically $121.80 for people who sign up for the first time in 2016.

One thing to consider is whether your federal retiree plan provides the coverage you may need as you age, said Schwarz.

“We’ve heard from some people that the [federal retiree plans] don’t offer the same home care or skilled nursing facility benefits, that they might have higher cost sharing,” she said.

I have a Medicare Advantage plan, and I decided to get a pneumococcal immunization last fall. My understanding was that it should have been free if I got it from a provider in my plan’s network. My primary care provider didn’t stock the vaccine and wouldn’t order it for me. After several calls to my insurer, an employee finally told me to get the shot at a non-network provider such as the health department and get reimbursed for the $194 cost. I did that, but now my insurer won’t reimburse me because I didn’t use the correct provider. What’s someone supposed to do in these circumstances?

You should appeal the insurer’s decision, said Jocelyne Watrous, who works for the Center for Medicare Advocacy.

Medicare covers two doses of the pneumoccocal vaccine, which protects against certain types of pneumonia. The shots are covered under Medicare Part B and generally given in a doctor’s office. There’s no charge for beneficiaries, according to a spokesperson for the Centers for Medicare & Medicaid Services.

Your Medicare Advantage managed care plan has to have an adequate network of providers for covered services. If you can’t find an in-network doctor to give you the shot, you should be able to go to an out-of-network provider for it, said Watrous.

“In the case where a patient absolutely cannot find an in-network provider to administer the service, then she can work with the insurer to address in-network versus out-of-network status,” said Clare Krusing, a spokesperson for America’s Health Insurance Plans, a trade group. “In this case, the patient can choose to move forward with an appeal.”

If my ex-spouse and I have to repay health insurance premium tax credits to the Internal Revenue Service for a marketplace plan we had in 2014 when we were still married, can we set up separate payment plans?

Yes, if you’re divorced or legally separated and filing separate tax returns, you can have separate payment plans with the IRS, said Mark Luscombe, principal federal tax analyst at Wolters Kluwer Tax and Accounting, an information publisher and consultant.

Assuming you both were covered under the policy, you can decide how to divvy up how much each of you will pay. If you don’t reach an agreement, the IRS will split it 50/50, according to IRS rules.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Email questions for future columns: KHNHelp@KFF.org. Michelle Andrews is on Twitter: @mandrews110.

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Cancer And Arthritis Drugs Drive Up Spending On Medicines

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Spending on prescription drugs in the U.S. rose 5.2 percent in 2015, driven mostly by increased costs of expensive specialty medications to treat conditions such as rheumatoid arthritis, according to data from the largest manager of employers’ drug benefits.

Spending on specialty medications rose 18 percent, while spending on standard prescription drugs rose less than one percent, according to a new report by Express Scripts. The report is based on the prescription drug spending for the company’s 80 million covered patients.

The measure — called “drug trend” in pharmaceutical industry parlance — includes increases in the use of medications and price hikes.

Still, in the health care industry, an increase that’s more than quadruple the rate of inflation — 0.7 percent in 2015 — still counts as a bit of good news. Why? In 2014, drug spending increased more than 14 percent.

“In a year when all the headlines were about the escalating price of drugs, overall costs rose only 5.2 percent,” says Glen Stettin, Express Scripts’ chief innovation officer.

The overall boost in drug spending was moderated by patients switching to generic drugs from brand names, whose prices rose 16.2 percent.

Stettin attributed that shift to pharmacy benefit managers and insurers exerting more control over the drugs their customers can get. Express Scripts and other companies have been more willing to refuse coverage of expensive medications than in the past.

The company pointed to its initial refusal to pay for Gilead Sciences’ hepatitis C drugs, which were listed at more than $90,000 for a course of treatment. Instead, Express Scripts opted to cover an alternative treatment, Viekira Pak made by AbbVie, for which it negotiated a 50 percent discount. Express Scripts has said it saved as much as $1 billion with the deal.

Brand name drug prices are more than 2 1/2 times as high as they were in 2008, while generic prices have declined by about two-thirds.

For traditional pills, “total costs are flat as result of generic and effective price negotiation by payors,” says Ronny Gal, a pharmaceutial industry analyst at the investment firm Alliance Bernstein. “For specialty drugs, there are more drug introductions, at very high price per patient per year, and we still don’t have effective alternatives on the market.”

The report says the surge in spending on specialty drugs was caused in part by the 29 new medications that were approved by the Food and Drug Administration last year, including 19 cancer drugs that are being used on a large number of patients. The prices of older cancer drugs also rose, including for example, the price of Gleevec, which is used to treat adults with leukemia. It went up 19.3 percent last year, the report says.

But drugs for rheumatoid arthritis, psoriasis and other inflammatory illnesses sucked up the largest share of cash. Express Scripts says treatments for such conditions cost every person with insurance about $89 last year. Insurers use a measure known as “per member per year” to show how spending is spread across population of insured people.

Diabetes treatments dominated the spending on nonspecialty medications, the report shows, with spending rising 14 percent last year. Three of the top five traditional prescription drugs were diabetes medications — Lantus and Humalog, which are both forms of insulin, and Januvia, a pill that helps control blood sugar.

People who bought insurance through the exchanges created by the Affordable Care Act spent an average of $777 on medications last year, about 15 percent higher than the year before.

The big increase “may be due to patients in this population filling a previously unmet need,” according to the report.

Since the exchanges have only been in place for two full years, Stettin says this is the first time there was good information available about people covered by those policies.

The spending increase “is consistent with the belief that people in the exchange plans, people with chronic conditions, are getting medications for the first time,” he says.

The Express Scripts report takes into account the effect of rebates that the company negotiates with drugmakers without disclosing the details of the arrangements. Rebates are considered trade secrets.

Bruce Stuart, executive director of the Peter Lamy Center for Drug Therapy and Aging at the University of Maryland School of Pharmacy, says the data are different from what he would have expected based on trends in retail prices.

“I have no reason to doubt their numbers,” he tells Shots. “If they say that they are getting better deals, there’s no way to validate that. “

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Bad Luck Or Bad Genes? Dealing With BRCA And 'A Cancer In The Family'

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Oncologist Theodora Ross discusses the hereditary nature of cancer and her own predisposition to breast and ovarian cancer, which led her to have a double mastectomy and to have her ovaries removed.

Transcript

TERRY GROSS, HOST:

This is FRESH AIR. I’m Terry Gross. If you have a history of cancer in your family, you may be wondering if you should get a genetic test to see if you have any genetic mutations that might predispose you to cancer. My guest has had a lot of experience with that issue, professionally and personally. Dr. Theodora Ross directs the Cancer Genetics Program at the University of Texas Southwestern Medical Center. She is an oncologist who specializes in treating breast cancer, and she directs a research lab focusing on how cancer genes turn normal cells into cancer cells.

In spite of her knowledge and in spite of the history of cancer in her family including her uncle, father, mother, brother and sister, she didn’t get tested until she was diagnosed with a melanoma. The melanoma was successfully treated but it scared her into wanting to know if she had the so-called breast cancer gene. After getting tested, she found out she had that gene. We’ll hear what she did in response a little later. Dr. Ross has written a book that’s part memoir, part medical science, called, “A Cancer In The Family.”

Dr. Theodora Ross, welcome to FRESH AIR. So I have never gotten a kind of genetic testing that you’ve gotten, so I do not know if I’m genetically predisposed to cancer. I’m not sure I want to know. For me it, a little bit of self-deception is probably – (laughter), is maybe a healthy thing. You’re an advocate of testing. You direct a cancer genetics program yet you put off getting tested yourself for years in spite of a history of cancer in your family. So why did you put it off for so long?

THEODORA ROSS: I was around the edges of trying to understand my own family’s history of cancer. We were in a study by a research institution. I talked to a genetic counselor and asked them if they knew anything. And, it’s interesting, they said it was not clearly hereditary in our family, but I changed the words around and told my fiance at the time that it was clearly not hereditary, and we went ahead and got married. But within the first year of getting married, I came down with melanoma, and at that point, I think, was when that denial went away.

And I decided to talk to another friend who was a genetics expert at The Ohio State University, and they evaluated me. I got tested. And I can just say it really changed how I saw things. So I went from this state of constant uncertainty and not knowing to knowing, and it was exhilarating. It was…

GROSS: Exhilarating? Scary is a word that comes to mind for me. (Laughter).

ROSS: It was exhilarating because all of a sudden, we discovered we had a particular mutation, a BRCA1 mutation, going throughout our family that certainly was a contributor to my sister’s death and…

GROSS: Your sister died of breast cancer.

ROSS: Breast cancer, yes. In her 30s.

GROSS: So you mentioned you were diagnosed with melanoma before getting genetically tested. That was treated surgically and that…

ROSS: Exactly, it was tiny melanoma. (Laughter).

GROSS: OK so you were done with that, but then you got tested, found out that you tested positive for the so-called breast cancer gene, which also left you predisposed to ovarian cancer. So after getting this information and thinking it through, you decided to have a double mastectomy and to have both of your ovaries removed. How did you reach that decision?

ROSS: Well, once I figured out I had the mutation, it was pretty clear because I think I’d been thinking about it for years. You know, being a doctor, being an oncologist, seeing the data, I’d been thinking about it. So I was already prepared, plus I’d seen my sister go through this and other people in the family go through these things. And so for me, it was an instant decision – I don’t want to get that, I don’t want to go through that, and the data is really good for that preventing cancer. So it was a pretty quick decision for me. Many patients, it’s not. It takes them some time.

GROSS: So you had the surgery done. How long ago was that?

ROSS: That was in 2004. So 12 years ago.

GROSS: So how effective was getting the double mastectomy and the – getting your ovaries removed? How effective was that in diminishing your fear of getting cancer?

ROSS: A hundred percent. (Laughter). I mean, I – of course, I could have a relapse or I could get a new melanoma, if that’s caused by this BRCA mutation. I could have cancer, yes. But the reality is, is I probably have a lower risk of breast cancer and ovarian cancer than the general population.

GROSS: So you tried to understand the source of your genetic predisposition to cancer. Your father and your mother had cancer. One of your uncles had cancer. Your sister died of cancer. Your brother had cancer. So – but you were assuming that since Ashkenazi Jews are especially prone to have this genetic predisposition, and since your father is Jewish and your mother not, you assumed that this gene came from your father’s side of the family. But in doing your genetic research, you learned something very interesting about your mother’s family. What did you learn?

ROSS: Well, yes, it was really quite shocking. So, you know, Mother’s always right, as they say. So when we discovered that I had the mutation, we went to visit her. We had Sunday dinner with her and we were talking to her about it and telling her that this came from her late husband’s side of the family, certainly, since he was a Jew.

And she said, no, that’s not the case. And we said, no, it is the case. And she also didn’t get the idea that my brothers each had a 50 percent chance of having this mutation. They hadn’t been tested at that time, it was so early in this discovery. And as we were talking, it became clear that as part of this research study we were in, she had received a letter when my father was dying.

He was in hospice and so she kind of filed it away – but, a letter from them saying, we have new information for you. And when I got all the records from them and I’m reading through it, I find that they’d never tested my father. They’d tested my mom, and she was the one -the Polish Catholic – that carried his supposed Ashkenazi Jewish mutation.

GROSS: So what responsibility did you feel to the rest of your family when you found out that you had this gene? ‘Cause if it runs in the family, do you have a responsibility to tell, like, you know, nieces and nephews and uncles and aunts and cousins? And, say they don’t want to know?

ROSS: Yes, once you find out you’ve found a mutation, there is a responsibility to inform as many relatives as you can because you can save their life. When I first got the mutation information, I called my uncle – my dad’s brother – because remember, he’s Jewish and so we thought that’s where the mutation was. And he’s a psychiatrist and understands medicine.

And he, right away, even though he’s Jewish and ultimately we would’ve found out it hadn’t come from his family, he still tested to make sure because he’s got four daughters and a son. And he turned it out to be negative, which was really great for them. My mother’s side of the family, it’s more difficult. We don’t know people like my father’s side of the family, and one of the hopefully exciting parts of this book will be that they’ll read it and they’ll find out they have a mutation and save their life.

GROSS: So you are a strong advocate of genetic testing, but not everybody needs to get tested? Like, who should get tested?

ROSS: I think it should start out with looking at your family. And a family history is so important, so hard to get. It’s a noble cause to try to get an accurate family history. You’d be surprised how inaccurate our family histories are, including my own. I don’t know if my aunt had ovarian cancer, or was it endometrial cancer? Everybody goes back and forth on that, and the records don’t exist. But getting that family history is the first step before testing.

And if you find your family history has a strong, you know, component of cancer in it or of some other disease – heart disease or a neurologic disease – seeing a genetic specialist and flushing that out, they help you. They go through each step, they tell you what the issues are and whether or not you’re really looking at this right. So it’s an objective view. And then they can help you determine whether or not there’s a specific gene or set of genes to figure out whether there is a genetic predisposition to your disease, cancer or otherwise.

GROSS: Why do you need to know this before getting tested? I mean, why can’t you just give a sample and say, tell me what mutations I have?

ROSS: It’s tough because we have 20,000 genes in our genome. We have lots of interspersed sequences. We have a very complex genome. So just sequencing your genome won’t help you very much. If you’re Ashkenazi Jewish then it is a reasonable thing to consider getting tested for the mutations with that heritage. So there are three BRCA mutations – BRCA1, two of them, and BRCA2, one of them – that are at a high enough frequency in the Ashkenazi Jewish population that screening for those is a reasonable thing. I think it’s 1 in 40.

And so those are reasonable getting without any family history – you’re Ashkenazi Jewish, I’d test for those three. But in general, just testing people is kind of a random process and so the family history will tell you. And in addition to that, if your family history is, you know, very – there are lots of cancers – like, for example, Angelina Jolie had a BRCA1 mutation, and she had a very strong family history. With that, her risk is higher than somebody who has the same mutation but doesn’t have a family history but has a large number of females in it. It’s not just the mutation that contributes to the risk, it’s also the amount of cancer in the family and how early those cancers occurred.

GROSS: If you’re just joining us, my guest is Dr. Theodora Ross. Her new book is called, “A Cancer In The Family: Take Control Of Your Genetic Inheritance.” She leads the Cancer Genetics Program at the University of Texas Southwestern Medical Center, and she leads a lab that investigates how cells transform from normal cells to cancer cells. Let’s take a short break then we’ll talk some more. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. And if you’re just joining us, my guest is Dr. Theodora Ross. She’s the author of a new book “A Cancer In The Family: Take Control Of Your Genetic Inheritance.” And she leads the cancer genetics program at the University of Texas Southwestern Medical Center in Dallas. She also leads a lab that investigates how cells transform from normal cells to cancer cells.

And she tests positive for the gene that predisposes people to breast cancer and ovarian cancer. She had a double mastectomy and had her ovaries removed in around 2004 when she found this out. So do you give people any advice about how to make the decision if they do test positive for the breast cancer gene, how to decide whether to have a mastectomy or not?

ROSS: Yes. I mean, you really – it’s so individual. And luckily, we have genetic counselors who can help, you know, with the daily process of going through that. It takes more than, you know, just oh, I have the information and therefore I’m going to have the surgeries or I’m going to be followed and try to catch an early cancer. You know, it takes some time.

And if a person doesn’t have cancer when they find out they have the mutation, there’s no rush. So that’s the first thing, you know, take your time. But in the end, the reality is that if you have these surgeries, you prevent cancer. This is one of those cancers – situations – it’s like smoking. If you stop smoking or you don’t smoke, the chances are you won’t get lung cancer. If you have prophylactic surgeries, the chances are you won’t get breast cancer or you won’t get ovarian cancer – pretty good chances. I mean, there’s a very slight chance that you will, but you’ve reduced it by 95 to 99 percent.

GROSS: Say you get tested and you’re positive for the gene, but you don’t want to get a mastectomy. Is this going to be on your health records? Will employers ever know about this and decide not to hire you because you’re predisposed to cancer? Will your health insurance rates go up? What are some of the outcomes as information ripples out into the world, if it does?

ROSS: Well, there is the Genetic Information Nondiscrimination Act that was passed in 2008, which does in some cases prevent such discrimination. So, for example, if you’re – work for an employer that has more than 15 employees, they can’t discriminate if they find out that you have a mutation, a genetic defect that may affect your health. In this case, If you have the surgeries, however – and life insurances are starting to catch on to this – is if you do this, it’s sort of like not smoking. All of a sudden, you’re a good bet for them. And they’re starting to catch that.

So life insurance is also something that you probably want to get before you find out if you have a mutation. But I’ve talked to people who are insurance agents for life insurance companies, and they’re starting to advocate for it and for action, which is remarkable. But in terms of the Nondiscrimination Act, it was a big deal for genetics so that you can get tested. And in terms of insurance companies – health insurance – you cannot be discriminated against.

It does get into your record now. It used to be we had these shadow records where we didn’t put them into the real record. And that was a real problem because then we lost all these people who had mutations and we weren’t able to have an accurate medical history on these patients. So now it’s in the record, it’s good. And in terms of discrimination, I feel it’s becoming a historical fact.

GROSS: One of the things you write about in your book is how there’s a lot of secrecy surrounding cancer. You write about the difference between secrecy and privacy. Privacy came up for you when you found out that you were positive for the cancer gene, the breast cancer gene. And your husband – who works in a lab that shares a building with a lab that you had – he sent out to what I think is a really interesting email to his fellow workers in that lab. And I just want to read an excerpt of it.

It starts with you may have noticed I’ve been unusually busy and stressed lately, and I thought it important to share with you some personal information. And he goes on to tell them that you were diagnosed with melanoma in the fall, you had surgery. It was caught early. But as a result of that and cancer in your family, you got the genetic test, which came back positive.

So he writes (reading) the medical issues are complex and distressing. As as a result, Theo and I are quite preoccupied as we work to resolve them. I’m sure that you can understand that this is personal and know that you will respect our privacy by keeping this information confidential. I realize that you may be concerned, but please don’t ask for updates or additional information from me or Theo as we’re trying to figure this stuff out ourselves. I thought that was really an interesting – I understood the explanations and him asking for, you know, his colleagues to respect your privacy. And I was kind of surprised when he said don’t ask for updates or additional information. Can you talk more about that request and why it was important to you both?

ROSS: You know, we really wanted to do the right thing. We wanted to get the right surgeons. We wanted to tell all the family members. We wanted everybody who needed the information to have the information. It was complicated, you know, just trying to figure out where to do things, how to get them done, how to keep our jobs going, how to keep our family happy. And to have distractions of other people, that was a big issue is just to keep it simple and keep go forward and get it done.

GROSS: Now, if I understand correctly, all cancers are caused by genetic mutations but only some of those mutations are genetically passed on…

ROSS: Right.

GROSS: …Within families.

ROSS: That’s right.

GROSS: So what percentage of cancers are genetically passed on?

ROSS: People say 10 percent of cancers have an inherited component that we know of. There was a recent study – it was called the Nortrac (ph) study in Norway and other countries in that area. They looked at identical twins versus fraternal twins and looked at their cancer incidents.

So if you looked at an identical twin and it had cancer and then its other twin had cancer, how frequent was that compared to the fraternal, where they’re not identical genetically? And from that, they did a lot of mathematical gimcrackery, something like that, discovered that 33 percent of the common cancers have a genetic component, meaning an inherited component that contributes to their cancer.

GROSS: That’s pretty high. And what happens to the genes when it’s not an inherited issue? Like, if the genes are still causing cancer, what do we know about how they’re transformed during the course of a person’s life?

ROSS: Well, the genes that are important in causing cancer – in that, we call it the sporadic situation. It’s like you have a blueprint. Your blueprint is what you inherit. And then on the blueprint, there’s a renovation, and it’s a malignant renovation. And the malignant renovation is these other genes – oncogenes are formed, translocations are formed where a gene becomes too active. And it can cause the cell to proliferate and proliferate and proliferate. And more mutations occur as it proliferates liberates.

Every time a cell divides, it has to copy its DNA. And every time it copies its DNA, there’s a mistake here or there. And sometimes that mistake’s not fixed. And so we get more and more mutations. And when you get mutations and genes that prevent the cell from dying, so it just keeps surviving, causes it to invade organs, causes it to survive in an organ it shouldn’t survive in, that’s when you get cancer. And those are sporadic mutations added on to your blueprint.

GROSS: If you’re having a preemptive double mastectomy to preventer yourself from getting breast cancer, you’re exposing yourself to a lot of risk. That’s a pretty major surgery. Convince me that it’s really worth the risk when you don’t know what the odds are for sure that you would get breast cancer, but you do know for sure if you have the double mastectomy or exposing yourself to the risk of infection to, like, if you want reconstructive surgery, you’re exposing yourself to the risk of several surgeries. It’s going to take a toll on your body. You know for certain that that’s going to happen.

ROSS: Yes, you do. But a mastectomy – you know, bilateral mastectomy and reconstruction puts you at some risk for, like you said, infections and side effects and issues. But if you have a 50 to 80 percent chance of getting a breast cancer that’s going to kill you, weighing at the pros and cons there, I think the mastectomy is the way to go because then you prevent that. You go from, you know, a 50 to 80-percent chance down to maybe a 5 percent chance if some cells are left over. And you have a nice long life. You know, if you do the math, it’s not so bad.

I have to say, you know, mastectomies are not a big surgery. The oophorectomy is a little bit more complicated because you’re taking out the ovaries and you have all of a sudden instant menopause. And there are issues with that – you know, bone density issues, you know, health issues as well as quality-of-life issues, hot flashes, those kind of things. But still, it’s a lot better than the alternative, the alternative of dying in your 40s or 50s.

GROSS: That’s an alternative you witnessed with your sister.

ROSS: Yeah. Yes, with my sister and many patients who’ve had these mutations.

GROSS: Well, Dr. Ross, thank you so much for talking with us.

ROSS: Thank you.

GROSS: Dr. Theodora Ross directs the cancer genetics program at the University of Texas Southwestern Medical Center. She’s the author of the new book “A Cancer In The Family.” After we take a short break, we’ll hear from Paul Rust and Gillian Jacobs, the stars of the new Netflix comedy series “Love.” And rock critic Ken Tucker will review the new album by the band of Lucius. I’m Terry Gross, and this is FRESH AIR.

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No-Drill Dentistry: Fluoride Treatments Can Prevent Cavities In Adults

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Vidhya Nagarajan for NPR
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Vidhya Nagarajan for NPR

If the high-pitched whirr of a dentist’s drill as it bores into your molar terrifies you, good news! There could be fewer fillings in your future. A painless way to prevent cavities in adults is gaining traction.

“OK Alice, we are going to put the fluoride varnish on your teeth,” says Marion Manski, director of the Dental Hygiene Program at the University of Maryland School of Dentistry. Fluoride varnish is standard practice for children’s teeth, but Manski’s patient, Alice Clash, is 91 years old. Like many older patients, Clash is taking medications that cause dry mouth, which puts her at high risk for cavities.

So Manski takes a skinny brush and a little pot of yellowish liquid and paints the varnish on Clash’s teeth. “We know that saliva helps us wash away bacteria and food in the mouth,” Manski says. “The fluoride varnish will help that.”

One way fluoride helps is by seeping into the enamel and drawing the calcium and phosphate that’s naturally present in the saliva. The minerals boost the teeth’s natural healing process and make them more resistant to future decay. But there are other theories about how fluoride works. It strengthens the enamel before the tooth erupts which is why it’s so important for children. And it attacks the acid producing bacteria in the mouth. One study shows it makes it more difficult for this bacteria to stick to the teeth.

It takes about a minute, and the fluoride treatment is done. Some patients are also given a prescription for a concentrated fluoride gel which can be used at night.

“These preventative approaches work on adults just as well as they do on children,” says Norman Tinanoff, a professor of pediatric dentistry at the University of Maryland. He says part of what’s making fluoride treatments popular for adults is a move to make dental care personal, with an individual treatment plan for each patient. To do that, you have to weigh a patient’s risk of getting cavities.

One of the biggest proponents of this approach is John Featherstone, dean of the UCSF School Of Dentistry. Featherstone came up with a comprehensive way of measuring a person’s risk for caries, or tooth decay. It includes testing the level of bacteria in the mouth, looking at dietary habits, medical conditions, medications, saliva flow and history of tooth decay. When Featherstone put his patients on personal treatment plans, he found the strategy worked.

“It really proved that drilling and filling did not fix the disease,” Featherstone says. “Putting in a filling fixes that hole in the tooth but it doesn’t deal with the bacteria in the rest of the mouth.” Most bacteria are friendly, but a couple of bad actors can cause cavities. These guys feed on sugars and expel acid that eats away at the enamel.

Traditionally, dentists were taught that the only way to deal with decay was to drill it out. That’s still important in some cases, Featherstone says, but without fixing the underlying problem of bad bacteria, patients just keep coming back for more fillings. Featherstone saw another way. “It’s a little bit like your car is starting to rust,” he says. “If you can stop the rust before the rust goes right through the body of the car then you’re in good shape.”

Like rust, tooth decay is a slow process. A full on cavity is a hole that needs to be fixed. But if you catch decay early, Featherstone says, it can be reversed using fluoride treatments like varnish and concentrated toothpaste and gels.

“In the past we believed tooth decay was a rapidly progressive disease. But research shows it’s slowly progressive,” says Wendell Evans, associate professor of dentistry at the University of Sydney. He recently published a study that found using these techniques reduced the need for fillings in adults by 30 to 50 percent. Striking as these results seem, the concept isn’t new. This shift to a preventive model of dentistry is decades in the making. “Some of the stuff in our study has been known for 50 years,” Evans says, referring to the use of fluoride treatments.

“Prevention has always been a part of the world of dentistry,” says Richard Valachovick, president of the American Dental Education Association. “What we’re seeing is a generational shift,” Valachovick says. As dentists have come to better understand the microbiology of the mouth, more effective preventive techniques have followed.

But cost has been an issue. Insurance companies routinely pay for fluoride treatments for children but not so much for adults. The National Association of Dental Plans couldn’t give a definitive answer about coverage, but calls to some individual carriers and dental offices suggest it depends entirely on the type of plan you have. Some higher end plans cover two fluoride treatments per year, while cheaper plans tend not to cover any. If you pay out of pocket, a varnish treatment costs from $23 to $55 compared to a filling, which ranges from $86 to $606, according to the American Dental Association.

Cost could also be a factor for dentists. Featherstone and Wendell say some dentists may be reluctant to embrace the preventive methods because they worry they’ll lose money because they won’t be doing as many costly procedures.

At this point, Featherstone says, two thirds of dental schools in the US teach some kind of disease management model based on a thorough risk assessment. And he expects that at some point all dentists will follow a preventive protocol.

“It will happen,” Featherstone says. “It’s just a matter of time.”

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SOS: Puerto Rico Is Losing Doctors, Leaving Patients Stranded

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A doctor walks through a hallway at the Centro Medico trauma center in San Juan, Puerto Rico, in 2013. A medical exodus has been taking place for a decade in the Caribbean territory as doctors and nurses flee for the U.S. mainland, seeking higher salaries and better reimbursements from insurers.
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A doctor walks through a hallway at the Centro Medico trauma center in San Juan, Puerto Rico, in 2013. A medical exodus has been taking place for a decade in the Caribbean territory as doctors and nurses flee for the U.S. mainland, seeking higher salaries and better reimbursements from insurers. Ricardo Arduengo/AP hide caption

toggle caption Ricardo Arduengo/AP

Puerto Rico is losing people. Due to a decade-long recession, more than 50,000 residents leave the U.S. territory each year—most for jobs and new lives on the mainland. This issue is especially affecting healthcare, where it’s estimated that at least one doctor leaves Puerto Rico every day.

The mass exodus of doctors is creating vacancies that are hard to fill and waiting lists for patient care. Dr. Antonio Peraza is among those doctors who recently left for the mainland. He specializes in internal medicine and for nearly 14 years, had a private practice in Bayamon, Puerto Rico.

His was a wrenching decision to close his practice and take a job offer in Miami, Florida.

“I wish you could have seen my patients. My patients, the day I told them I was going to close my office, they cried,” Dr. Antonio Peraza says. “I felt like I was betraying them.”

For decades, long before Obamacare, Puerto Rico has had a government-run healthcare system that provides coverage for nearly everyone on the island. It offers generous benefits, but has never been adequately funded.

Nearly two-thirds of the island’s residents are covered by Medicaid or Medicare. But both of those programs cap payments to Puerto Rico at levels far below what the states receive.

And in the last few years, Peraza says Medicare payments—already low—have been cut further.

“What they have been doing unfortunately is taking these Medicare cuts and passing them along to providers and the patients. Which, we are the weakest link of the chain,” Dr. Peraza says.

Faced with a declining income, Peraza decided to move to Florida and sell his office building and practice in Bayamon. But so far he says, he hasn’t found a doctor interested in buying him out.

“Because most of them are in the same plan as I am doing. Maybe they are a little behind. Plan B is you have to leave the island because there’s no other way, there’s no choice,” he says.

Congress is working on a plan to help Puerto Rico fix its economic problems and avoid defaulting on its more than $72 billion debt. Puerto Rican officials are hoping the plan will also include an increase in Medicare and Medicaid funding.

Meantime, the exodus of doctors, nurses and other healthcare professionals is making it hard for hospitals and clinics on the island to fill vacant positions. Puerto Rico already had a shortage of specialists.

Domingo Cruz Vivaldi is vice-president of San Jorge Children’s Hospital in San Juan and he says, with so many doctors leaving, it’s getting worse.

“To see an adult rheumatologist right now, today, the waiting period it can be four to five months. And some of them are moving out. And then to replace those physicians, it takes a decade,” Cruz Vivaldi says.

The outlook is no better for young doctors just starting their careers. At the University of Puerto Rico, one of four medical schools on the island, Manuel Rodriguez is doing a residency in orthopedic surgery. He says of his friends, only about one in five plan on staying in Puerto Rico to practice.

“I would love to stay here,” Rodriguez says. “But seeing the reality we live every day here with the resources that the hospital has, with the resources that the government has. It’s difficult to think that we’re going to stay here in Puerto Rico.”

After his residency, Rodriguez says he’ll look for a fellowship on the mainland. Fourth year medical student Milagros Lopez says opportunities and pay are better there, but Puerto Rico is home.

“There’s a huge economic incentive to stay away, which is a sad, sad truth. But the thing is, we are a different group of people,” Lopez says. “This has our home, our family, our language. So, I think there is an attachment that’s kind of unavoidable there.”

Lopez says she hopes to come back to Puerto Rico after completing a fellowship on the mainland, but knows life might intervene. Her brother left for a surgical fellowship in the states five years ago, she says. Today, he’s married, has two kids and lives in Detroit.

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Clinton's Comments On Nancy Reagan And HIV/AIDS Cause An Uproar

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Patti Davis (left) greets Rosalynn Carter as Hillary Clinton looks at the casket during the graveside service for Nancy Reagan at the Ronald Reagan Presidential Library on Friday in Simi Valley, Calif.

Patti Davis (left) greets Rosalynn Carter as Hillary Clinton looks at the casket during the graveside service for Nancy Reagan at the Ronald Reagan Presidential Library on Friday in Simi Valley, Calif. Chris Carlson/AP hide caption

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Hillary Clinton apologized on Friday after she called the late Nancy Reagan a “very effective, low-key” advocate on HIV/AIDS awareness.

The Democratic presidential candidate now says she “misspoke” when she told MSNBC during Reagan’s funeral that the former first lady and her husband, President Ronald Reagan, pushed for recognition of the disease in the national community.

“It may be hard for your viewers to remember how difficult it was for people to talk about HIV-AIDS back in the 1980s. And because of both president and Mrs. Reagan — in particular Mrs. Reagan — we started a national conversation,” Clinton said.

“When before nobody would talk about it, nobody wanted to do anything about it, and that too is something that I really appreciate with her very effective, low-key advocacy, but it penetrated the public conscious, and people began to say, ‘Hey, we have to do something about this, too.'”

However, it wasn’t until 1987 that President Reagan gave his first speech on the topic, calling for more testing (but not making it mandatory). At that time, according to the New York Times, there had been nearly 36,000 cases of AIDS and nearly 21,000 deaths. Reagan has been roundly criticized for not doing enough to educate the public and draw attention to the growing HIV/AIDS epidemic during his administration.

Clinton released a statement hours later, apologizing for her remarks.

Hillary Clinton’s statement on her comments about the Reagans’ record on HIV and AIDS: pic.twitter.com/RtIs0zpJfk

— Hillary Clinton (@HillaryClinton) March 11, 2016

Even Clinton supporters were up in arms over her ill-phrased comments.

Former Clinton White House aide and Human Rights Campaign President Chad Griffin, whose organization has endorsed Clinton, tweeted the former first lady was “no hero” on the issue.

While I respect her advocacy on issues like stem cell & Parkinson’s research, Nancy Reagan was, sadly, no hero in the fight against HIV/AIDS

— Chad Griffin (@ChadHGriffin) March 11, 2016

Other LGBT activists, such as columnist Dan Savage, also pushed back on social media.

Reagans started a “national convo about AIDS” only if people screaming “WHY WON’T YOU TALK ABOUT AIDS?!?” at them counts. @HillaryClinton

— Dan Savage (@fakedansavage) March 11, 2016

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Split Views On Health Overhaul In Ohio

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Ohio residents feel split about Obamacare

Ohio residents feel split about Obamacare Ken Orvidas for NPR hide caption

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Adults in Ohio are divided when it comes to whether they believe the Affordable Care Act has been good or bad for them.

And while most rate their own health care positively, far more Ohioans rate the state’s overall health care system as fair or poor than rate it as excellent. Those are some of the findings in a series of recent polls by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health.

Lilo Whittaker, who responded to the poll, lives on a wooded one-acre lot in rural Ohio. The setting is idyllic on a cold winter morning. Chickadees chirp outside and a pot of coffee brews in the kitchen.

Lilo Whittaker, 59, says her husband’s medications increased in price and their health insurance now has a high deductible. “I really don’t understand,” she says. “I mean, I thought when they did the affordable health care act that things would get better for everybody. But I don’t believe that that’s true.” Sarah Jane Tribble/WCPN hide caption

toggle caption Sarah Jane Tribble/WCPN

But at nearly 60 years old, Whittaker says the picture isn’t perfect. When Whittaker first heard about the federal health overhaul several years ago, she expected it would help.

“I thought, this is great,” Whittaker says. “People will be able to afford their health insurance, get decent coverage and begin to take care of their medical issues.”

But, in the past two years, Whittaker says, her husband’s Parkinson’s medications went from just over $150 a month to more than $400. The couple’s health insurance coverage has also become less affordable.

“A lot of people like me will forgo going to a doctor even if they have a problem because you can’t even afford your deductible or your copay,” she says. “And I don’t think your health insurance issues here are addressed properly.”

Whittaker is among the 27 percent in Ohio who say Obamacare has directly hurt them. On the other hand, 21 percent of Ohioans say it has directly helped them.

At the Free Medical Clinic of Greater Cleveland, there is a steady stream of patients on a recent weekday afternoon.

Over the past two years, the clinic has seen a shift in the people it cares for. More of them have coverage, like 29-year-old Whitnie Momah.

Whitnie Momah, 29, says she would be uninsured without the expansion of health coverage offered under the Affordable Care Act. As a nursing student, she signed up for a low-cost plan on HealthCare.gov, saying, “It’s been a huge blessing for me.” Sarah Jane Tribble/WCPN hide caption

toggle caption Sarah Jane Tribble/WCPN

She smiles when asked about her health care insurance. “I hear a lot of people say that for them it’s gotten worse, but for me, it’s gotten better,” Momah says. “Before I made too much money to qualify for, like, any type of government assistance but not enough money to where I could afford my health insurance.”

Momah is a nursing student. She says she would be uninsured if she hadn’t called for help with HealthCare.gov, the federal insurance exchange. They walked her through the site, and she’s now enrolled in a low-cost health insurance plan called Buckeye.

“It really helped me out, it really did,” she says. “It was a huge blessing for me.”

Momah’s experience, as well as Whittaker’s, are two different but very real pictures of Ohio, says Robert Blendon, a professor at the Harvard Chan School.

The polarization there is even more extreme than the nation.

“In Ohio, there are shares of people who really feel that they’ve been helped by the law and changes in recent years,” Blendon says. “There are shares of people who actually don’t feel they have been helped and actually hurt. And it’s not a unified view of what is going on in Ohio. The divisions are really quite large.”

Nearly 900,000 people have gained health care coverage in the past two years in Ohio – about 240,000 with federal marketplace plans and another 650,000 through Ohio’s expansion of Medicaid – something Republican Gov. John Kasich did despite his party’s opposition.

You can find the detailed results of the national poll here.

Results for Ohio are here.

At the same time, people enrolled in employer-sponsored health insurance have seen a steady climb in the amount they pay out of pocket. One analysis shows that by 2014, Ohio was third in the nation for the most people enrolled in high-deductible health plans.

Reem Aly, a researcher with the nonpartisan Health Policy Institute of Ohio, says people tend to blame the Affordable Care Act for the trend toward high-deductible plans.

“It can be a very polarizing issue,” Aly says. “Every person has different circumstances and health care can be very personal.”

For Lilo Whittaker, the ACA is a promise left unfulfilled. She questions why some benefit so much and others, like her, don’t. It’s not fair, she says.

“We just go without. We don’t do anything,” Whittaker says. “Christmas was kind of depressing for the grandkids because I told them, I couldn’t afford to do what I used to be able to do,” Whittaker says she has always paid her bills. But now, to afford her husband’s medication, she doesn’t pay them as well as she used to.

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