Author Archives: The MS Wire

About The MS Wire

Retired radio news reporter, anchor and news coverage manager at the Associated Press. Now writing a weekly column for www.multiplesclerosisnews.com and articles for www.fairfaxnews.com.

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)

A Tough Year to Fight the #Flu

My son and his wife and one of my grandkids have been fighting the flu.

This is not a year to get the flu.

The type of flu circulating in most of North America right now is the H3N2 variety. And, in the words of Helen Branswell in a STAT article she’s written, H3N2 is “the problem child of seasonal flu.”

H3N2 kills more people than any of the other flu varieties. It’s also the toughest strain to protect against. Research shows the flu vaccine, which inoculates against several varieties, is only about 33 percent effective against H3N2. The component in the same vaccine that fights H1N1 flu, on the other hand, is about twice as effective. Influenza expert Dr. Ed Belongia, quoted in Branswell’s article, puts it this way:

“The biggest challenge or frustration is that H3 … for whatever reason, is the virus that we see causing the most severe illness in large numbers of people. And it’s also the virus for which our vaccine is least effective. And so that’s a double whammy that so far we have not been able to adequately deal with.”

The statistics this season bear this out. The Centers for Disease Control (CDC) reports “widespread” flu activity in 49 states. Only Hawaii has escaped so far. As of the final week of 2017, flu claimed at least 211 lives in the U.S. In Australia, where flu season precedes North America by about six months, health officials reported a record number of flu cases.

Flu shots for MS patients?

Last fall, when the North American flu season was just gearing up, I posed this question to my readers: “Flu Shot or No Flu Shot for MS patients?” The response I received on some social media platforms surprised me. Though the majority of people said they had (or would get) one, several answered: “never,” “not me,” or “I got the flu from the shot.” It seems to me this is a dangerous way of looking at a vaccine that saves lives. I got mine in October.

The National Multiple Sclerosis Society thinks getting a flu shot is a no-brainer. Its website says:

“The seasonal flu vaccine has been studied extensively in people with MS and is considered quite safe, regardless of the disease-modifying therapy they are taking. However, individuals being treated with Lemtrada® should be given the inactivated flu vaccine six weeks before receiving their Lemtrada infusion.”

That NMSS webpage is a good source of more detailed flu vaccine information with information related to specific disease-modifying drugs.

Can the vaccine give me the flu?

Doctors say the flu vaccine doesn’t give you the flu, but here’s why some people may think it does, according to the CDC:

  • Other respiratory viruses cause symptoms similar to flu and also spread and cause illness during the flu season. The flu vaccine only protects against influenza, not other illnesses.
  • It’s possible to be exposed to influenza viruses, which cause the flu, shortly before getting vaccinated or during the two-week period after vaccination that it takes the body to develop immune protection. This exposure may result in a person becoming ill with flu before protection from the vaccine takes effect.
  • The flu vaccine can vary in how well it works and some people who get vaccinated may still get sick. That seems to be the case this flu season.

Have you had your shot?

The flu generally peaks in February, so there’s still time to get a shot. You can get one in nearly any pharmacy in the U.S. and, in most cases, it’s covered with no co-pay. If you’re still on the fence, at least hear what your doctor has to say about it.

I’m very glad that I got my flu vaccine again this year, as my wife and I have for decades. I’m really glad that my son and his family all had theirs. Though they’re sick they’re getting better. Their illness could have been worse.

(This is an updated version of a column that first appeared on http://www.multiplesclerosisnewstoday.com)

Monkey See, Monkey Do: Helping Hands for People with MS

I was just monkeying around while on vacation a few weeks ago, amazed that the animals jumping between my wife and myself were actually listening to the commands of their owner. I knew that chimps and apes were smart, but seeing monkeys respond to commands was new to me.

I had no idea how well some monkeys can be trained until I read an article in Neurology NowThere, I discovered that some of these little guys are helping people with MS and some other disabilities with their daily activities.

These service monkeys are capuchins. They’re considered to be the most intelligent of the monkey family, similar to chimps and, some say, as bright as a 3-year-old. Since moving in with MS patient Corrine Peters, who’s profiled in the article, a capuchin named Glassie has learned to take off Peters’ shoes, retrieve objects, and help get mail out of her mailbox. Capuchins can also be trained to turn book pages and door knobs and even scratch an itch or groom a patient:

The monkeys are trained to do all this at a nonprofit organization called Helping Hands, and it’s not a quick or simple task, as the Neurology Now article makes clear:

“The monkeys are raised from infancy with a foster family to become accustomed to living in a home. At about age 8, they are transferred to “Monkey College” in Boston, where trainers work one-on-one with them — a process that can take up to five years.”

Once a monkey is placed in a home, a trainer spends about a week with the family getting the capuchin and the family comfortable with each other. And then there’s continued telephone support.

It’s also not a simple task to obtain one of these six-to-eight-pound helpers. The application process may take as long as six months and it requires interviews with family members and caretakers and a video tour of a patient’s home. And not everyone is eligible. For example, you need to spend most of your time at home; to be able to control a wheelchair; and there can be no young children in the home. Also, the Helping Hands website cautions that not every patient will find a monkey match.

“The application process is deliberately designed to give us adequate time for this exploration. For most applicants, this takes three to six months. Applicants who complete the entire process may be matched with a carefully selected monkey helper. For others, the process will reveal that a monkey helper is not the right fit.”

But when the fit is right, the match can be a life-changer. Helping Hands’ Erica Noyes, quoted in Neurology Now, says having a monkey “puts the recipient back in control. The monkey doesn’t see the person as injured or ill. It sees him or her as its protector and boss.” And, says Corrine Peters, “Every day is a new adventure.”

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

My Lemtrada Journey: A New Year’s Update

Happy new year to all.

The start of the new year seems like a good time to assess what my journey has been like since my first round of Lemtrada (alemtuzumab) back in December 2016. The road has had bumps and hills and dips. But, overall, Lemtrada has taken me where I hoped it would — a place where my MS seems to be stable and my symptoms seem to be a bit improved.

The first three months post-infusion were a real roller coaster. The lowest dip was in late January of 2017, when I developed a fever, slight headache, and a cough. Naturally, my energy level also dropped. It was diagnosed as strep, and after downing antibiotics for about 10 days I was much better.

Around the five-month point, my wife thought I was walking a little better. That’s still the case, but not always. I can flex my left foot up from the ankle just a little. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been reduced significantly. An MRI of my brain at six months showed no new, active, or growing lesions. But my brain scan has been stable for many, many years anyway. It’s the lesions on my cervical and lumbar spine that are giving me mobility problems. On the other hand, a physical exam by my neurologist confirmed what my wife Laura had detected: I was walking a bit better. So, all positive stuff.

Other small changes involve my B&B: bladder and bowels. Sorry if I’m over-sharing, but I’m happy to report that my bowels have become slightly more regular and my bladder control has improved, with less urgency and less frequency. Most nights I’m up only once to make a pee trip and, occasionally, I even sleep a straight six or seven hours. That alone is worth the price of admission to the Lemtrada roller coaster.

Are there still problems?

Back in February, I developed an aching pain in both hips. At times, that pain would shoot down one or both legs when I put weight on them. My neuro told me it wasn’t related to the infusions. Some Lemtrada patients suggested that it’s the feeling of my body “making new bone marrow.” The shooting pain disappeared last spring. The ache remains today, but it’s much less noticeable.

Last fall, I developed a pain in one shoulder that runs down my arm when I move it to certain positions. It feels like it’s in my muscle and I’m thinking it may be tendonitis. It seems to improve with rest and staying away from my keyboard (!), and I’m planning to try some physical therapy to see if that helps.

What about my labs?

Lemtrada is designed to deliver a knock-out punch to B- and T-cells that carry an antibody that’s thought to play a roll in destroying myelin. When the immune system reboots, it’s hoped the new B- and T-cells will appear minus that rogue antibody.

Because the Lemtrada treatment attacks parts of our immune system, we “Lemmies” have a fixation with the results of the monthly lab tests that we’re required to have. So far, they show my treatment is acting as advertised. After one month, my CD-4 count was down to 40 (normal is 359-1,519) and my CD-4 percentage was 10 (normal is 38.8-58.5). That showed the drug destroyed a bunch of T cells, as it should.

A month later, the CD-4s were above 200, which is the level at which anti-viral medications are no longer required. That count has hung just below the normal range ever since. That’s to be expected. CD-4 measures T-cells, and we want them to return slowly, over a year or even much longer.

On the other hand, B-cells are expected to return to normal after six or eight months. (That’s why Ocrevus, which only attacks B-cells, requires an infusion every six months.) I’m happy to say that at six months, most of my B-cell measurements were just a little lower than normal.

Then, there’s the TSH count, which measures thyroid function. That’s an important measurement because Lemtrada can impact thyroid function. I’d been on a thyroid medication for a number of years prior to Lemtrada, so when my TSH count began to rise slightly above normal at about the 10-month point, it was a simple matter to correct that by slightly changing the dose of my thyroid med.

Ready for round 2

Well, not quite yet. Normally, I would have had an MRI and a visit with my neuro last month in advance of round two. But my wife and I left Maryland on New Year’s Day to drive to Florida, and my doctor and I decided that the MRI, the exam, and round two could all wait until after our late March return home. Look for my next Lemtrada update in early Spring.

(The post first appeared as one of my columns in www.multiplesclerosisnewstoday.com)

MS Marketing Study

I’m not familiar with Baltimore Research so I can’t vouch for them. However, this information was sent to me by the folks at Can Do Multiple Sclerosis, which is a solid organization. Since many of you may be interested this marketing research I’m passing it along FYI.

Ed

Baltimore Research has a study coming up that you or someone you know may be interested in. If you know of someone who might be interested, please forward this email to them.

We are looking for 18-64-year-olds who have been diagnosed with MULTIPLE SCLEROSIS (MS).

Those who qualify and participate will receive $150 for their time and opinions.

To see if you qualify, please call our office at 410.583.9991 and reference Project Hazel. You will then be directed to a recruiter who will ask you a few questions to see if you qualify for the study.

Please be assured that we are not selling anything, nor is this for clinical trials or endorsement for any products. This is for market research and we are only interested in your opinions.

Thank you,

Baltimore Research