“Will I still have coverage?”

As Congress lays down the groundwork for dismantling the Affordable Care Act, doctors across America are hearing cancer patients speak of their fear of losing access to care if the law known as “Obamacare” is jettisoned without replacement.

“Just in this last week, I saw two of these patients, who were just getting ready to start treatment. They questioned me with tears in their eyes,” said Patrick Loehrer, director of the Indiana University Melvin and Bren Simon Cancer Center. “They had insurance coverage because of the ACA and wanted to know what was going to happen to them if they couldn’t pay for their chemotherapy.

“I don’t have an answer for that right now,” Loehrer said to The Cancer Letter. “My hope is that Congress will pause, reflect and have a genuine dialog about what works about the ACA and what doesn’t.”

As Donald Trump takes office Jan. 20, insurers, patients, and physicians wait eagerly for the 45th president of the United States to make it clear what he intends to do about the massive health insurance program.

The Cancer Letter spoke with Loehrer and three others who are watching these events closely: Clifford Hudis, CEO of the American Society of Clinical Oncology, Patricia Smith, CEO of CancerCare, and Kirsten Sloan, senior director of policy at the American Cancer Society Cancer Action Network. Their in-depth comments appear in this issue.

Without adequate and timely replacement, the repeal could render health care coverage unaffordable and wreck the already volatile market. A replacement plan could take between 18 to 36 months to enact, observers say.

Most patients who are currently enrolled under the health care law will continue to have coverage through the end of 2017, unless Congress drastically rolls back subsidies for the ACA.

Speaking to The Washington Post Jan. 14, Trump offered assurances that he is close to introducing his plan for providing continued coverage for the 20 million Americans who obtained insurance under the ACA.

“We’re going to have insurance for everybody,” Trump said to the Post. People covered under ACA “can expect to have great health care. It will be in a much-simplified form. Much less expensive and much better.”

It’s unclear how Trump and the GOP leadership would offset the cost of broader, more affordable health care insurance if the ACA’s individual mandate were to be eliminated.

“I might ask the same thing about how we’re going to pay for the wall that’s planned between the United States and Mexico,” said Patricia Goldsmith, CEO of CancerCare. “I might ask how we’re going to pay for all of the tax cuts. I could ask, ‘How do you propose doing that, President-Elect Trump?’ with virtually everything that comes out of his mouth.

“It is absolutely a folly—a folly!—to think, if you understood the workings of Congress, this country, and the complexity of the health care system, it’s folly to think that they can design, very quickly, a plan that could approximate or be better than the ACA.”

Trump said he would force pharmaceutical companies to negotiate on prices in Medicare and Medicaid.

“They’re politically protected, but not anymore,” he said to the Post.

American “competitiveness” and jobs need to be protected, said the Pharmaceutical Research and Manufacturers of America, an industry lobby group.

“The United States biopharmaceutical industry leads the world in medical innovation. Biopharmaceutical companies invest more than $70 billion a year in research and development in the United States—more than any other industry in America—and are responsible for 4.5 million American jobs,” Stephen Ubl, president and CEO of PhRMA, said in a statement. “Breakthrough medicines are revolutionizing how we treat disease, saving patient lives, reducing health care costs and improving public health.

“Today, medicines are purchased in a competitive marketplace where large, sophisticated purchasers aggressively negotiate lower prices. We look forward to working with the new administration and Congress to advance proactive, practical solutions to improve the marketplace and make it more responsive to the needs of patients.”

What’s at stake?

Trump’s declaration that he is close to finishing a replacement plan comes after Republicans have moved to repeal the ACA. The repeal would be achieved through a procedural mechanism called “budget reconciliation,” which allows the Senate to fast-track legislation by avoiding filibusters—in this case, by Democrats.

Under Senate rules, the reconciliation process requires a simple majority for the legislation to pass, which means the Republican-controlled Senate has an easier time advancing conservative budget agendas. A caveat: only provisions that contribute to deficit reduction can be amended.

In the first step of a two-part process, the Senate voted 51-48 Jan. 4 to begin debate on the budget resolution, which includes instructions for the reconciliation process. A vote on the reconciliation bill may not take place until February or later, as lawmakers hash out language for repealing the ACA.

The strategy may prove to be effective: the ACA’s tax penalties and subsidies are fair game under the reconciliation rules. However, it is unclear which parts of the health care law Republicans plan to dismantle, beyond Trump’s vows to “completely repeal Obamacare,” and the GOP’s commitment to eliminating the ACA’s individual mandate.

For cancer patients and healthcare providers in oncology, the following ACA provisions are at stake:

• Prohibition against denying patients’ coverage based on their pre-existing medical conditions,

• Prohibition against capping the amount of care received annually, or in the patient’s lifetime,

• Protection from “rescission,” a process that insurers use to arbitrarily rescind policies,

• Mandatory “Essential Health Benefits,” a package of 10 benefits that covers hospitalization, latest treatments, preventive services, etc., and

• The “Meaningful Access” rule, a prohibition against denying patients coverage and access to clinical trials.

In a November interview with The Wall Street Journal, Trump said he would consider keeping coverage for pre-existing conditions and allowing young adults up to 26 to stay on their parents’ insurance. To date, the incoming administration has not provided details on how a replacement plan would pay for those provisions.

“Prior to the ACA, if you were a cancer patient, an insurer could refuse to sell you an insurance policy because cancer was considered a pre-existing condition or they could sell you a health insurance policy, but exclude any service that related directly to cancer,” said Kirsten Sloan, senior director of policy for the American Cancer Society Cancer Action Network. “So millions of people with cancer and cancer survivors found it very difficult to either get or retain insurance.”

“Under the current law, these restrictions are prohibited which provides cancer patients and others with serious chronic conditions critical protections,” Sloan said to The Cancer Letter. “We want to make sure that any replacement package maintains all of these kinds of protections for cancer patients and others.”

ACA repeal: a time machine?

Repealing the ACA without a comprehensive replacement could set American health care back decades in terms of ensuring access for all patients, said IU’s Loehrer.

“I candidly believe that Congress won’t be inclined to suddenly put millions of people who are insured, back into uninsured status—that would have a huge economic impact upon health care in Indiana and the other 49 states,” Loehrer said. “Who would absorb the costs, for it is not in the fabric of physicians to turn our backs on the sick? Likely this burden would fall back on our poorly funded county hospitals or charitable organizations, which are ill-equipped to handle this preventable crisis.

“No doubt, many patients will make the choice to avoid care and miss the opportunities for potentially curable treatments rather than place a financial burden on their families.”

Changes in the existing law should be done with deep engagement of health care stakeholders—patients, advocates, providers, payers and regulators, said Clifford Hudis, CEO of the American Society of Clinical Oncology.

“To be clear, I don’t have any precise idea what exactly will be maintained or potentially challenged in a repeal and replace plan,” Hudis said to The Cancer Letter. “I don’t mean this in a negative way; we don’t know what they are going to propose as an alternate way of subsidizing care. We just don’t know right now. We have to see it.

“If you can’t get insurance because of pre-existing conditions, and if the lifetime cap is removed—this is pure speculation right now—they would potentially have an impact on patients and on families. And that to me is the concern, first and foremost.”

Critics of the ACA point to rising insurance premiums as a primary reason for repealing the law: under current conditions, premiums are expected to increase by 25 percent this year, on top of the 7.5-percent hike in 2016 (The Cancer Letter, Oct. 28, 2016).

Before implementation of the ACA, premiums grew annually by an average of 10 percent to 11.7 percent, according to an editorial by Hagop Kantarjian, associate vice president for global academic programs and chair of the Department of Leukemia at MD Anderson Cancer Center.

“Going back to pre-ACA private insurance status can result in the loss of health care insurance by over 20 million Americans, and increase the net federal deficit by an estimated $100 to $200 billion over 10 years,” Kantarjian wrote in the January 2017 issue of Cancer, a journal published by the American Cancer Society. “It also is inconsistent with the premise that health care is a human right rather than a privilege.

“A ‘public option for all’ has, at present, little chance of overcoming the existing political-ideological-societal hurdles. The best option for Americans is to improve on our current and quite successful ACA health care system.”

Provisions that must not be eliminated

The incoming administration needs to keep the ban on annual caps and lifetime caps, said CancerCare’s Goldsmith.

“Historically, lifetime maximums were calculated collectively based on what the insurance companies paid,” Goldsmith said. “So if we go back to that, given the high cost of cancer treatment, we could have many individuals, even if they had an option of a plan, that would have no coverage for their cancer. That’s about as bad as it gets.

“The heart of this, and most concerning, is this has a massive spillover effect, that means patients won’t have coverage for their hospitalization. That’s going to impact hospitals and cancer centers. It means they won’t have coverage for their radiation, it will impact community cancer centers.”

The number of patients who file for bankruptcy is 2.5 times higher for patients with cancer, compared to those without cancer. Also, patients who have gone bankrupt have an almost 80 percent higher death rate than patients who are not bankrupt, Loehrer said.

“There are few diseases in which the cost of care is as high as it is for cancer,” he said. “One could easily surmise that the fiscal toxicity, to which all of us in the health sector contribute, is almost as bad as promoting cigarette usage. We have work to do.”

Prior to the ACA, insurers would use a number of cost containment methods to limit their financial liability for certain categories of patients, said ACSCAN’s Sloan.

“Some of the other mechanisms that insurers used included annual or lifetime caps—dollar limits on the amount that the insurer would pay for your condition,” Sloan said. “And insurers could also rescind a policy.

“So, even if you were fortunate enough, as a cancer patient, to get insurance you could find yourself on the backend losing that coverage, because either your plan was capped at a dollar amount and your care exceeded that cap, or your planwas rescinded.”

All Americans should have access to affordable and adequate health care coverage, ASCO’s Hudis said.

“We think that anybody who has insurance right now should be guaranteed uninterrupted access,” Hudis said.

“We don’t want people who have coverage to lose it, and I want to be fair—most people talking about repeal also add that they are not going to remove coverage from anybody. We’ll see, but this would be a principle that we should adhere to.”

Who would absorb the costs, for it is not in the fabric of physicians to turn our backs on the sick? Likely this burden would fall back on our poorly funded county hospitals or charitable organizations which are ill-equipped to handle this preventable crisis.

The IU Simon Cancer Center, like many NCI-Designated Cancer Centers, is responsible for its catchment area—for us, it’s the state of Indiana. Since 2010, when the ACA was enacted, an estimated 340,000 Hoosiers now have health insurance who didn’t have it previously.

Just this past week, I saw two of these patients, who were just getting ready to start treatment. They questioned me with tears in their eyes. They had insurance coverage because of the ACA and wanted to know what was going to happen to them if they couldn’t pay for their chemotherapy. I don’t have an answer for that right now.

One problem that has previously plagued patients and was addressed by the ACA is that of pre-existing conditions. In the past, many insurance companies were quick to figure out ways to drop these patients from their payroll in order to minimize expenditures and to keep the premiums low for the rest.

For small companies who had few employees, pressure was extraordinary on the leadership, who would sometimes encourage patients with catastrophic illnesses, like cancer, to quit or retire so as not to place a huge burden of premiums on the remaining employees.

This was not typically a problem with bigger companies that could dampen the cost of insurance among many other health employees. In such settings, often a spouse might carry the insurance, but many people were essentially locked into their jobs for fear of losing coverage. Going back to those times would be a huge financial and emotional burden for our patients and their families.

My hope is that Congress will pause, reflect and have a genuine dialog about what works about the ACA and what doesn’t. “Revise and Replace” may not sound as catchy, but for our patients with cancer, this is a more prudent verbiage than to simply use the word, “repeal.”

I candidly believe that Congress won’t be inclined to suddenly put millions of people who are insured, back into uninsured status—that would have a huge economic impact upon health care in Indiana and the other 49 states.

Who would absorb the costs, for it is not in the fabric of physicians to turn our backs on the sick? Likely this burden would fall back on our poorly funded county hospitals or charitable organizations, which are ill-equipped to handle this preventable crisis.

There are ongoing natural experiments at the state level evaluating different policies, such as Medicaid expansion plans in Arkansas and Iowa (private option), and in other states like ours, which are evaluating various forms of Medicaid premium and co-pay requirements.

The Healthy Indiana Plan (or HIP) promulgated by [Mike Pence] our new vice president while [Eric Holcomb] our governor is considered by some to be a model for how states might be able to have an alternative to the ACA. These options have advantages and disadvantages and are worthy of thoughtful discussions, but must be patient centric.

For cancer patients, even those that have insurance, the cost of chemotherapy out of pocket can range anywhere from $100 to thousands of dollars per month. Even as physicians, when we look at our own extended families, we quickly realize that there no way that our parents, siblings or children can afford optimal cancer treatment without assistance. No doubt, many patients will make the choice to avoid care and miss the opportunities for potentially curable treatments, rather than place a financial burden on their families.

There are few diseases in which the cost of care is as high as it is for cancer. Beyond the significance of ensuring insurance coverage to defray the cost of health services for our patients, we also need to recognize the responsibility of health care providers to curb costs by eliminating unnecessary tests and futile treatments.

It is important to note that the number of patients who file for bankruptcy is 2.5 times higher for patients with cancer, compared to those without cancer.

In addition, those patients with cancer who file for bankruptcy have almost an 80 percent worse mortality than those not facing bankruptcy. One could easily surmise that the fiscal toxicity, to which all of us in the health sector contribute, is almost as bad as promoting cigarette usage. We have work to do.

As a society, we need to band together to decrease the burden of health care costs upon our patients. The rise of health care expenditures far exceed inflationary averages. The efforts to curb costs by physicians and hospitals have begun to mute this growth in the last several years, but we still patiently wait for efforts to the curtailing of costs of our therapies.

If we truly strive to be one of the healthiest nations in the country, everything should be on the table, including drug pricing. This value proposition has been advocated by many, including ASCO, and I hope that this reflects a new norm of collaboration to limit costs and maximize efficiencies.

Stripping away the oft, polarizing name, Obamacare, let’s go back to the original title of this bill, The Patient Protection and Affordable Care Act. At the end of the day, is this still not the goal to provide “protection” to our family, friends and those who are disadvantaged, who now suddenly find themselves as cancer patients? Is it still not our responsibility to make this care “affordable”? Do we not all understand the importance of minimizing the number of uninsured patients and increasing access to quality “care”?

My hope is that the cooler heads will prevail. I think we all wish for our country to have the best health care in the world, and that starts with having everyone in our country having access to quality and affordable care.

If you can’t get insurance because of pre-existing conditions, and if the lifetime cap is removed— this is pure speculation right now—they would potentially have an impact on patients and on families. And that to me is the concern, first and foremost.

One of the principles that we are very clearly standing on: we absolutely believe that all Americans should have access to affordable and adequate health care coverage, and in particular, with regards to cancer care, we think that that people with pre-existing conditions should continue to be covered with no limitations on that.

We think that lifetime coverage caps should be eliminated, as well as annual coverage caps, with guaranteed renewability. These are very specific insurance policy issues and they may or may not be in the replacement plan, but they are important.

We think that anybody who has insurance right now should be guaranteed uninterrupted access. We don’t want people who have coverage to lose it, and I want to be fair—most people talking about repeal also add that they are not going to remove coverage from anybody. We’ll see, but this would be a principle that we should adhere to.

We think that anybody who has cancer should have access to health insurance that assures them access, not just for cancer care in a general way, but high quality care delivered by a cancer specialist at a high quality center. This includes the range of needs of a cancer patient, so it isn’t just seeing a doctor, but for argument’s sake, counseling and rehab and nutritional support and so on.

We think prevention and screening services should be maintained and improved, if anything. We think that the current availability of so-called “no co-pay access to screening” should continue. That encourages what the world says they want, which is less advanced cancer and greater early detection, so we want to make sure that that’s maintained.

Clinical trials is the other big issue. As you know, and under certain circumstances, certain insurance plans have actually represented a potential barrier to trial participation. We think that all patients with cancer should have meaningful access to clinical trials. And by meaningful access, we don’t mean that they’re technically eligible. We mean that the trial that’s in their community is available to them and that they’re not in a narrow network, for example, that prevents them from getting to it. There are examples of people who say, “Well, I’m covered for trials,” but they have to drive 200 miles. Well, that’s not meaningful access.

We think that, more broadly, the unfolding efforts to focus on quality of care, affordability and access, really should continue. That is to say that value-based reform should continue, and that anything we do should be patient-centered.

Finally, we hope that any changes in the existing law are accomplished with deep engagement of the stakeholders, and I mean patients and advocates and providers, as well as payers and regulators, so that everybody’s needs are represented.

For high-risk pools, it depends on the cost to participate, it would depend on the access they provide, it would depend on the coverage that they supply. I’m being, obviously, very careful about this, because I think that we don’t know yet what it is we’re responding to.

If you can’t get insurance because of pre-existing conditions, and if the lifetime cap is removed—this is pure speculation right now—they would potentially have an impact on patients and on families. And that to me is the concern, first and foremost.

To be clear, I don’t have any precise idea what exactly will be maintained or potentially challenged in a repeal and replace plan. I don’t mean this in a negative way; we don’t know what they are going to propose as an alternate way of subsidizing care. We just don’t know right now. We have to see it. But these principles should guide us, no matter what is coming.

President-Elect Trump owes all individuals who have coverage under the ACA, and all cancer patients, an explanation of how they will be covered, so that they are not worried and wondering if they will be able to access the care that they need.

I think we have enough information to express great concern. While the Affordable Care Act has its issues, its challenges, and is certainly far from perfect, there are some very key provisions in that act that have greatly benefited cancer patients.

Clearly, the absence of out-of-pocket maximums is one; probably the most notable is that pre-existing conditions cannot be the basis for insurance ineligibility, which has been a major issue for cancer patients. I can speak to that personally, from the perspective of a cancer survivor—not having to worry about pre-existing conditions is a great weight off my shoulders.

Another concern is that the incoming administration appears intent on completely dismantling a program that has some very strong points, as well as weak points. But the [Trump] administration seems to want to do this, with the delusional perspective of being able to create something that is better, more affordable, higher quality, yet with a total absence of details, and, quite frankly, with a team of individuals working on it that probably have very little knowledge, individually or collectively, about the realities of health insurance and the realities of the marketplace for cancer patients.

It’s difficult for me to believe that somehow, the administration could say, “We’re getting rid of and dismantling the ACA”—President-Elect Trump isn’t even in the White House, and he’s already ‘working on this.’

I don’t understand the rationale of, “We’re going to preserve the great elements of it, but we’re going to deal with the elements that are not so great by doing A, B, C, D, E, F.” Yet, there is no plan. And I don’t think there is a level of understanding and appreciation for the dire consequences that, not only cancer patients, but other patients with chronic illnesses will face, where they may not have an alternative insurance option, the alternative may not cover them, or there may be lifetime maximums that have already been met.

Historically, lifetime maximums were calculated collectively based on what the insurance companies paid. So if we go back to that policy, given the high cost of cancer treatment, many individuals, even if they had an insurance plan option, would have no coverage for their future cancer treatment. That’s about as bad as it gets, since we know that increasingly, cancer is treated as a chronic illness.

How are we going to pay for healthcare? I might ask the same thing about how we’re going to pay for the wall that’s planned between the United States and Mexico. I might ask how we’re going to pay for all of the tax cuts. I could ask, “How do you propose doing that, President-Elect Trump?” with virtually everything that comes out of his mouth.

The heart of this, and most concerning, is that repeal of the ACA could have a massive spillover effect, so that patients won’t have coverage for their hospitalization. That’s going to impact hospitals and cancer centers. It means patients won’t have coverage for their radiation or surgery. It will impact community cancer centers.

The spillover impact of all of this is huge, and in spite of some of the frustrations—and there have been many, legitimately so; the ACA is far from perfection—this has allowed individuals who, historically were uninsured, to have some insurance, thus providing some payment to the providers who are caring for them.

It is absolutely a folly—a folly!—to think, if you understood the workings Congress, this country, and the complexity of the health care system, it’s folly to think that they can design, very quickly, a plan that could, approximate or be better than the ACA.

President-Elect Trump owes all individuals who have coverage under the ACA, and all cancer patients, an explanation of how they will be covered, so that they are not worried and wondering if they will be able to access the care that they need. I don’t know what that transition period would be like, but it’s certainly no secret that the insurers were not happy with mandates, not happy with lifetime caps being eliminated, or that coverage for pre-existing conditions is mandated.

So you can bet that those in the business of providing insurance are going to move as swiftly as possible to design a plan that would extinguish those “patient-friendly” provisions.

It’s horrifying that we have a president-elect who’s not even in the White House, who is hellbent on making dramatic changes that will dismantle many of the most beneficial advances of the ACA. I invite President-Elect Trump to join us in our offices here in New York, to hear from real patients and their social workers what it feels like to lose insurance coverage, or what happens when you can’t afford to pay for cancer treatment. That’s the dose of reality he needs.

As debate heats up in Congress on the ACA, I think it’s important to take a broad look at the initial goals of the law that should be shared with any new legislation. The ACA attempted to address several key aspects of health care including increased insurance coverage, access to high-quality care, improved affordability of care, and curtailing of cost trend across the system.

As with most legislation, it was not perfect, but I do have deep concerns regarding the rhetoric about the repeal without replacement of the ACA, as it will dramatically impact our patients.

Prior to the ACA, if you were a cancer patient, an insurer could refuse to sell you an insurance policy because cancer was considered a pre-existing condition or they could sell you a health insurance policy, but exclude any service that related directly to cancer. So millions of people with cancer and cancer survivors found it very difficult to either get or retain insurance.

Policymakers are currently considering repealing the ACA and replacing it with an alternative.

It’s not clear yet what that alternative is, or what those provisions would mean for persons with cancer or survivors.

There are several provisions of the current law that are very important for cancer patients and survivors and their families.

First and foremost are what we call the insurance market reform protections, including the prohibition against pre-existing condition exclusions.

Prior to the ACA, if you were a cancer patient, an insurer could refuse to sell you an insurance policy because cancer was considered a pre-existing condition or they could sell you a health insurance policy, but exclude any service that related directly to cancer. So millions of people with cancer and cancer survivors found it very difficult to either get or retain insurance.

Some of the other mechanisms that insurers used included annual or lifetime caps—dollar limits on the amount that the insurer would pay for your condition. And insurers could also rescind a policy.

So, even if you were fortunate enough, as a cancer patient, to get insurance you could find yourself on the backend losing that coverage, because either your plan was capped at a dollar amount and your care exceeded that cap, or your plan was rescinded.

Under the current law, these restrictions are prohibited which provides cancer patients and others with serious chronic conditions critical protections. We want to make sure that any replacement package maintains all of these kinds of protections for cancer patients and others.

Another really important provision for cancer patients and survivors is the essential health benefits package. People with cancer need to know that the insurance they purchase will cover the preventive services and treatments they need.

Current law provides something called an essential health package, or the EHP, which assures that a person purchasing insurance has a fairly robust set of benefits.

That’s particularly important for anybody with a serious chronic illness, whether its cancer, or heart disease, or diabetes. You want to know that you have access to the latest benefits and latest treatments available to help you with your condition.

Ultimately ACS CAN wants to make sure that all cancer patients and survivors have access to affordable health care coverage.

An earlier study done by ACS shows that someone without insurance who is diagnosed with cancer, tends to be diagnosed at later stages III and IV, when the cancer is more difficult to treat, and more expensive to treat.

That speaks loudly about the need for adequate and affordable insurance for all Americans, so that people have access to preventive services that detect cancer early and have access to the benefits that they need in order to get the treatment that they need.