Monthly Archives: February 2018

Where are the Handicapped Parking Spots?

It’s nice when a negative experience can be turned into one that’s positive.

I think that’s the result for a wheelchair-using MS patient following a problem she had at the Mall of America a few days before the Super Bowl. For those not familiar with the Mall of America, it’s a huge shopping mall just outside Minneapolis, Minnesota. Its promotional fact sheet says that the mall covers 5.6 million square feet, or as much as nine Yankee Stadiums, 10 Great Pyramids, 24 Sydney Opera Houses, or 53 Eiffel Towers.

The Super Bowl was in Minneapolis. Both football teams playing in the Super Bowl were staying in hotels at the mall, and a lot of special events also were scheduled, making the shopping center super-crowded. Because of that, the mall blocked off some parking spots near an entrance.

Among the spots that were blocked were several handicapped spaces. And when this MS patient looked for a van-accessible spot to park, she couldn’t find one. She wound up parking in a standard width spot and exiting the van through its rear door, rather than the one on the side. That meant she had to roll into a lane of moving cars and then drive alongside them to get to the entrance that she wanted to use. When she finally got into the mall and complained about the situation, she says a security guard told her the mall is private property and it can do what it wants. Needless to say, she was upset. Like many of us do when we’re upset, she vented on Facebook:

“Thank you Mall of America for blocking All of the handicap parking spaces and telling me that it was your right because it is private property.”

MOA HC spots 2

After contacting the woman who wrote the post to get details about what happened, I also contacted the PR department at the Mall of America. A spokeswoman told me that the spots were blocked for “safety and security” reasons. They wanted to prevent people from crossing the street between the parking ramp and the mall during an extremely busy time, instead, forcing them to cross using skybridges on other parking levels. The spokeswoman also offered to have an executive at the mall explain this directly to this woman.

There’s a key concept in public relations crisis management called the “Three A’s”: Acknowledge the problem, apologize, and make amends. While hardly a crisis, that’s what happened here. The angry MS patient spoke with a senior vice president at the Mall of America and the result was a good one. “There was more parking on the other side, but you wouldn’t have known that from where we pulled in,” she wrote me in an email. “We talked about placing a sign up next time, saying that there is additional handicap parking here. … He apologized for the response I received Friday night. … We said at the end [that] we all have to work a little harder to make life better for everyone.”

And there’s a P.S. to this story. It turns out that the senior VP’s father has MS. I’d like to be a fly on the wall the next time the father and son have a chat.

(This post first appeared as my column in http://www.multiplesclerosisnewstoday.com)

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Affording Your #MS Medications…or Not

Have you been in this Catch-22?

You had great medical insurance when you were working. But, you’re not working anymore. Your insurance now comes with a $6,000 deductible and it no longer covers any medications. That $6,000 is about a fifth of your yearly income. You took early retirement because of your MS, but the pension you’re getting puts you over the limit to receive Medicaid help. You can’t get Social Security disability payments because you’re older than 62 so you’re eligible for regular Social Security benefits. But you’re not yet old enough to receive Medicare.

I recently read a post very similar to that on one of the social media sites I follow. Sad to say, that situation isn’t unique. In fact, the day I read that post, the Kaiser Family Foundation released research showing that you might have a lot of trouble paying your medical bills, even if you’re on Medicare. According to the KFF study, in 2013 more than 50 percent of the people who were on traditional Medicare (Parts A, B, and D) spent at least 14 percent of their total income on out-of-pocket healthcare costs. Twenty-five percent of them spent nearly 30 percent. Ten percent spent close to 60 percent of their income.

KFF Medicare spending chart

It would seem to me to be an understatement when the study authors wrote:

With half of all Medicare beneficiaries living on annual per capita income of less than $26,200, out-of-pocket health care costs can pose a challenge, particularly for beneficiaries with modest incomes and those with significant medical needs.”

Not surprisingly, it’s worse if you’re in poor health, if you’re 85 or older, or if your income is less than $20,000.

revisedmedicare.png

It’s probably not going to get any better

The Kaiser analysis projects that, under current U.S. government policies, by 2030 the number of people spending 20 percent of their income on health care will rise from 36 to 42 percent. This is particularly important to understand as politicians talk of paying for income and corporate tax reductions by reducing spending on Medicaid, Medicare and Social Security.

There are some ways to ease the financial crush

The Multiple Sclerosis Society of America has programs to provide, at no cost, some simple things such as cooling vests and assistance equipment. And the MSAA recently added a biggie: assistance paying for some magnetic resonance imaging (MRI) exams.

In the United States, many drug companies have programs to provide their high-cost MS drugs to patients at a deep discount, or in some cases for free. The National Multiple Sclerosis Society has an excellent, drug-by-drug, list of programs on its website.

If your drug company isn’t able to help with your copay, a foundation is a good place to turn. It takes patience and good timing to obtain help from these nonprofits, but it can be worth the effort. If you qualify for the help (there’s still an income ceiling, but it’s usually fairly high), a foundation will approve a monetary grant for you. The grant will cover your copays and be paid directly to the pharmacy that’s providing your drugs for a specific amount of time — usually a year. A list of some foundations that are paying for MS drugs is found at the bottom of the National MS Society webpage that I mentioned earlier.

A couple of suggestions from MS patients, which I found online, include:

  • If you have no insurance, see if your medical provider will give you a cash discount and/or make it possible for you to pay over time with no interest.
  • Ask your pharmacist about prices for prescription drugs using, and without using, insurance. Sometimes it’s cheaper to pay cash. You can also look up prices on GoodRx. It also pays to check different pharmacies in your area.

Will Amazon impact the future of healthcare?

Details are scant, but Amazon has announced that it’s joining with financial giants Berkshire Hathaway and J.P. Morgan to cut healthcare costs for their employees. Could this be the start of a healthcare revolution? Stay tuned.

(This is an edited version of my column that originally appeared on www.multiplesclerosisnewstoday.com)

Heavy-hitting #MS Drugs Step to the Plate

I’m sitting in Florida and the start of spring training is only about a month from now, so please forgive a baseball analogy: The heavy-hitters of the MS-fighting treatments, the monoclonal antibodies (mAbs), are moving up in the lineup.

Five treatments currently are in the mAbs class: Ocrevus, Lemtrada, Rituxan, Tysabri, and Zinbryta. (Rituxan isn’t approved as an MS treatment in the United States. Nonetheless, it’s being prescribed off-label by some neurologists). Until recently, these mAb therapies weren’t usually prescribed as the first treatments for someone newly diagnosed with MS — one or two other disease-modifying treatments (DMT) were tried first. Two reasons appear to explain this. First, some patients and neurologists were concerned about the level of risk with these therapies. Second, some insurance companies and government health plans weren’t happy with their cost.

Costs

However, a recent audit of patients and neurologists by Spherix Global Insights, a business intelligence and market research company, reports an apparent change in attitude about cost:

“While neurologists report payers being at least somewhat restrictive during the current DMT selection process, only 28% of mAb DMT-treated patients were required to step through prior therapies before obtaining access to their current DMT. This finding suggests that payer-influenced treatment sequencing may not be a substantial barrier to increased use of mAb DMTs as induction therapy (the first treatment prescribed) in appropriate candidates.”

Risk versus benefit

A similar attitude change seems to have taken place regarding risk versus benefit. The report suggests that neurologists are increasingly prescribing certain monoclonal antibody therapies for their patients even though they may feel, as a group, that mAbs pose a risk. According to the report, neurologists believe that, for certain patients, the high-efficacy benefit of a specific mAbs made its risk “acceptable.”

Bravo!

In my travels around the social media world, I regularly read complaints from MS patients whose insurance, or government plan, won’t pay for one of the five monoclonal antibodies until that patient had failed two of the more conventional MS therapies. I also read about neurologists who are hesitant to prescribe mAbs, even for a patient whose disease is progressing rapidly. Hopefully, this new report is indicative of a change of attitude by doctors and by payers that will benefit those of us who fight the MS battle every day.

(This post first appeared as my column on www.multiplesclerosisnewstoday.com)