Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

health insurance

Merrily (NOT) We Enroll Along

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For those of us in the U.S. who are 65 and older, these weeks leading up to December 7 are our annual opportunity to choose a new Medicare plan. It’s called open enrollment season, but it’s not a season to be jolly. No, it’s a season to either stick with what works or bang your head against a wall.

I’ve used Blue Cross/Blue Shield here in Massachusetts for my Medicare supplement plan for the past four years, and it is not cheap, but it covers my many specialists at home and in Boston. On Monday, Al was reviewing his own coverage and spoke with a trusted insurance broker who recommended switching to another Medicare supplement program that would save about $45 a month over BC/BS. When Al encouraged me to speak with him, I declined.

Maybe it would be helpful, but I am totally risk averse on this topic. I know all my docs accept my insurance. The coverage is quite comprehensive. There is no copay.

Note that this is a Medicare supplement (Part F), not a Medicare Advantage Plan (Part C) that I’m talking about. I have avoided Medicare Advantage like the plague, because those plans are based on a narrow provider network, and I need broad access to specialists. Fine for seniors with minimal health issues. That’s not me.

A client who is very knowledgeable about how health insurance does and doesn’t work in this country has warned me that, eventually, Medicare supplements (Medigap) will be phased out and only Medicare Advantage will be available. I believe her, but so far, I’m still able to get the coverage I need. Not so for anyone enrolling new to the system. There are already limitations on who can get Medigap.

Ultimately, the glaring question is this: Why does this have to be so fraught and complicated? Given the current mess in Congress, chances of rational, comprehensive national health insurance in the U.S. is a distant dream. Even improving Medicare is a slog. A new law, part of the federal Inflation Reducation Act (IRA) that will cap out-of-pocket costs for prescriptions at $2,000 annually, won’t go into effect until January 2025. Efforts to include coverage for hearing aides in the IRA—an item needed by so many seniors that is a budget buster for custom hearing aides—failed for lack of political support.

I could go on and on, but I’ll spare you, Dear Reader. Let’s just say I find the whole topic infuriating. Health care in the richest country in the world should be a right and a common sense priority for public investment. End of rant.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Courtesy of Gratisography

Of Colonial Mariners and Health Insurance Mandates

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With all the controversy swirling around health care reform these days, it’s hard to find clarity. For so many, especially those of us living with chronic disease, the high cost of insurance deductibles and prescription drugs all too often forces impossible choices between paying basic living expenses and getting appropriate care. Narrow networks limit provider access. For all the advances of medical science, quality care is not guaranteed.

Our system in the U.S. has to change. But there is so much misinformation and disinformation about proposals for health care reform that it’s hard to know what’s the best, most viable solution. Any suggestion of government-supported universal health care is labeled anti-democratic by the right; those who prefer a choice between public and private options are tarred as sell-outs by the left. None of the bullying is helpful, to say the least.

So, I was wondering, as I write on President’s Day, whether the Founders had anything to say about government’s role in health care. Believe it or not, they did.

According to Harvard Law Professor Einer Elhauge, the very first U.S. Congress, in 1790, passed a law mandating that shipowners provide medical insurance for their seamen. Twenty of the Constitution’s framers were part of that body. And the law was signed by our first president, George Washington.

Eight years later, Congress passed another health insurance mandate regarding seamen. Since the 1790 law only covered them for medications and physicians’ services, Congress decided that when ship owners or masters came into port, they had to pay 20 cents per seaman for each month he had been in their employ. Those funds could be withheld from the mariner’s wages and were used “to provide for the temporary relief and maintenance of sick or disabled seamen, in the hospitals or other proper institutions now established.” Any funds left over were used to build hospitals for the sailors. President John Adams, whose legal writings had strongly influenced the drafters of the Constitution and Bill of Rights, signed that bill into law.

So it turns out that our federal government has, since its inception, played an active role in how health care is paid for and who should be covered. None of the Founders who were involved in those discussions considered it a violation of the Constitution to mandate health insurance. We can debate health care reform proposals on their merits—who is covered, who pays for what—but let’s keep the fear-mongering and flag-waving distractions out of the conversation. There’s too much at stake, and we have to get this right.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: “George Washington,” attributed to Rembrandt Peale, oil on canvas, ca. 1795. Worcester Art Museum collection.

To Appeal or Not to Appeal

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I’m pleased to report, three weeks post hand surgery, that I’m making small progress every day. I’m able to sit at my computer for most of the afternoon, and it’s been great to catch up with my clients and focus on projects instead of my hands. I drove short distances twice last week — to two separate medical appointments. My hands were tired afterward, but it was wonderful to feel that I had some independence again. This Tuesday afternoon, Dr. S removes the sutures in two of my fingers, which have been driving me crazy. Hoping this will help to relieve some of the chronic pain that I’ve been experiencing.

However, last Thursday I found out that I was declined for the hyperbaric oxygen therapy, otherwise known as HBO. It wasn’t a big surprise, because the criteria for insurance coverage are very narrow and specific, unless you have a diagnosis of diabetes. Which I do not.

I’m not sure what to make of this. The chance of improving the odds for healing pre- and post-skin grafts — the next step in my surgery — is certainly very appealing. At the same time, the huge time commitment that this therapy requires is daunting. As I mentioned in a previous post, it involves spending three hours a day, five days a week for six weeks, lying in a large chamber with a clear cover, during which time you are exposed to 100 percent oxygen to boost healing.

Although I am not claustrophobic most of the time, I have my moments. I’m only 5’2″ tall (actually a little less than that now, as I’ve started shrinking), and being amidst a large crowd can really spook me, because I can’t see over people’s heads. I’ve also had some uncomfortable experiences when I’ve had MRIs. One time, I had to press the panic button because I was starting to feel lightheaded by being so confined.

I have no idea if appealing the insurance company’s decision will make a bit of difference. Highly doubtful.

And yet . . . I don’t like the idea of giving up without a fight. I found a current research study in the International Journal of Dermatology that had very encouraging results for healing scleroderma ulcers using HBO. The only problem, as with so much scleroderma research, is that the sample size is so small — only six subjects. But every one of the subjects experienced improvement. So I sent the study along to the Wound Center, which has been handling the insurance inquiry, and I need to follow up with them.

Meanwhile, it’s time to prepare for Rosh Hashanah, which begins Wednesday evening. Al is my sous chef, with help from Emily, as well, come Wednesday. We look forward to gathering with family and friends for a festive meal to welcome in the Jewish New Year. This past year has brought some of the greatest health challenges that I have ever faced. Whether you celebrate or not, whatever your tradition and faith, may all in need of healing be blessed with improved health — physical, mental and spiritual.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image: The Lærdalstunnelen, 24.5 km, world’s longest road tunnel, from our Norway trip. There are beautiful blue lights at three intervals to break up the monotony, and, I suspect, to ease claustrophobic fears.

Existing Conditions

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With the presidential inauguration only a few days away and the Republican-controlled Congress on a fast track to repeal the Affordable Care Act, it’s essential for all of us who live with chronic diseases to understand what’s happening to health insurance coverage. Much is still in flux. I have been staying up far too late recently, reading the most reliable sources I can find to follow the pace and direction of “repeal and replace” of Obamacare.

I do not intend to turn this blog into a political forum on the issue. However, I will confess that I am deeply alarmed by what’s happening in Washington and what I perceive as the significant risks of repealing a flawed but beneficial law with no clear plan to replace it. The drafting of the ACA involved many participants in the health care system. Its replacement deserves similar, deep discussion and debate, and enough time to consider all the implications—especially for the millions of Americans who may now lose health insurance without the means to purchase needed coverage, if insurance subsidies provided under the ACA are eliminated.

The procedural rules that Republicans are using to push through reform are complex. The process of ACA repeal began last week with a special budget process called reconciliation, which requires only a simple 51-49 majority in the Senate and precludes filibuster by opponents. In accordance, both Houses passed a blueprint for repealing Obamacare. There is a long way yet to go. Here is a January 13, 2017 article by Margot Sanger-Katz from the New York Times that explains all the steps: Obamacare Repeal is Moving Forward. When Will Changes Affect Consumers?  As she notes, it’s highly unlikely that those currently covered by the ACA will feel the effects this year of a potential repeal.

I have been very fortunate to have excellent health insurance through my husband’s employer. Since I work for myself, buying private insurance, even in Massachusetts, which created the prototype for Obamacare, is expensive. But I know I can get it if I need to, even though I’ve had scleroderma for more than three decades.

At stake for so many out there with serious health issues is the pre-existing condition protection provided by the ACA. So far, the president-elect has expressed an interest in preserving this aspect of the law. But, it’s complicated. Here is an excerpt from another piece by Sanger-Katz, explaining what’s at stake. You can read the full article here: The Biggest Changes Obamacare Made, and Those That May Disappear

One of the law’s signature features prevents insurance companies from denying coverage or charging a higher price to someone with a pre-existing health problem. The law included a host of other protections for all health plans: a ban on setting a lifetime limit on how much an insurer has to pay to cover someone; a requirement that insurers offer a minimum package of benefits; a guarantee that preventive health services be covered without a co-payment; a cap on insurance company profits; and limits on how much more insurers can charge older people than younger people. The law also required insurance plans to allow adult children to stay on their parents’ policies until age 26.

What would happen? These rules can’t be changed using the special budget process, so they would stay in place for now. But eliminating some of the other provisions, like the subsidies, and leaving the insurance rules could create turmoil in the insurance markets, since sick customers would have a much stronger incentive to stay covered when premiums rise.

What might replace it? Mr. Trump has said that he’d like to keep the law’s policies on pre-existing conditions and family coverage for young adults, but Senate Republicans recently voted against nonbinding resolutions to preserve those measures, suggesting they may be less committed. Some of the other provisions would probably be on the table if there were new legislation. Republicans in Congress would probably eliminate rules that require a minimum package of benefits for all insurance plans and allow states to determine what insurers would have to include. Mr. Trump has said he’d like to encourage the sale of insurance across state lines, a policy likely to make coverage more skimpy but less expensive for many customers. Republicans would also like to expand tax incentives for people to save money for health expenses.

Many of the Republican proposals would also establish so-called high-risk pools, which would provide subsidized insurance options for people with chronic health problems who wouldn’t be able to buy insurance without rules forcing insurers to sell them coverage.

The debate is far from over. We each have an opportunity to express our views to our congressional representatives. Whatever your opinion on this subject, please read beyond tweets and headlines, be informed and willing to listen to other points of view, and make your voice heard.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Pablo Garcia Saldaña

Hidden Costs

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Just over a month into our new health insurance policy, and, although it could be worse, the view is not pretty. When the hospital where Al works was bought out last year, I had misgivings. I am not paranoid.

Aside from a four-figure deductible, which, I understand, is becoming the industry standard, we are now dealing with much higher copays for prescription drugs. Much higher. As in double or quadruple what I was paying previously.

I have four medications that are classified as “Tier Three,” which means that the copay is $100. This past year, on a monthly basis, one cost $25, one cost $35, and two cost $50 each. The new system requires me to buy a 90-day supply of one of these drugs, for $200, which brings the monthly cost to about $67. The other three cannot be purchased in bulk, so it’s $100 every time I need a refill.

It all works out to about $5,000 annually for these four medications, none of which have generic substitutions, all of which I need to stay healthy. I even checked out pricing on Canadian drug websites, but because these are all brand name drugs, there is no savings to be found.

So we’re stuck. In addition to this discovery, we also have learned that because the new policy started in July, but the policy year starts in January, we will have to pay the full deductible once again, starting in 2015, before we get any benefits from the plan for medical expenses. This is on top of premiums taken out of Al’s paycheck. Originally we thought his premiums would be lower than last year, but that does not appear to be the case.

Oh, and did I mention? The prescription co-pays don’t count toward the deductible, and there is no cap.

When you add it all up, it appears that this new policy will cost us at least $10,000, probably more, each year—and that’s just for me.

But there’s another hidden cost to the plan—and that’s time. Al and I both have made numerous calls to the health plan and pharmacy plan, just trying to understand what is covered and what isn’t. Then there’s all the follow-up on medications. To give just one example:

I have one medication that I’ve been taking for several years, with no problem under our former plan, that now requires pre-authorization. Okay, fine. I’ve dealt with this before. But we found out about the problem when the prescription bounced back at the pharmacy. This required a follow-up call to the doctor, to be sure she received the FAX with the request to submit the pre-authorization. Then I called the pharmacy plan to find out how long it would take: 72 hours.

All right, but in the meantime, I was out of pills. I called my doc once again and asked if she might have samples. Fortunately, she was able to give me a month’s supply. Her office is at the hospital, so Al was able to pick them up while he was at work, saving me a trip.

I went out of town last week on business and asked Al to follow up with the pharmacy. When I got home, he told me that they had not filled the prescription, yet. So I called the pharmacy to find out what had happened. They said the scrip was still on hold because it required a pre-authorization. Once again, I called the doctor’s office. The nurse told me they had sent in the forms the day I requested them.

Then we checked the mail. There was a letter telling me the request had been declined, because this was a brand name drug and there were other, cheaper meds that could work just as well.

The only problem, and this is why I had been prescribed this particular medication in the first place, is that all the other related drugs cause dry mouth, and I have dry mouth aplenty already due to Sjögren’s syndrome. So I called the doc’s office once again, informed them of the letter and explained the situation about why I couldn’t take those other meds. The nurse checked the pre-authorization file, and, of course, it turned out that no-one had thought to include that fact in the paperwork. So they will resubmit.

That’s just one prescription.

And there is more time involved for determining what my BMC doc visits will cost (they are included in our plan, but there is a facilities fee charge because they all work in hospital settings, and we have to apply for a “gap exception,” which requires proving that there is no one nearby who can perform the same service).

And extra research involved anytime any of us needs to seek medical services away from home.

There’s more to this, but I’ll stop here. You get the idea. Suffice it to say that, although I know a private-pay plan would cost even more, from what self-insured friends have told me, the reality is that we are taking a significant pay cut in our family income with this policy. I’m hoping to make up the difference with additional clients, but there are no guarantees when you freelance. The fact that I work for myself makes it easier to make all the research phone calls, but that’s time spent not earning.

Anyone who thinks that private insurers are making our health care system more efficient, think again. They’re only passing along more costs to the consumer, regardless of ability to pay. And the more complicated your health issues, the more you have to spend, even if your medical condition reduces your earning power.

I won’t be eligible for Medicare for another six years. And by then, who knows what benefits will still be available? Bottom line: Neither of us will be retiring any time soon.

Photo Credit: Peter Gerdes via Compfight cc

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.