Category Archives: Drugs

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)

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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)

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)

Flu Shot or No Flu Shot for MS Patients?

It’s that time of year again. The time of year where I keep seeing posts on MS social media sites asking, “should I get a flu shot?”

In my honest opinion, yes, definitely! There are certainly different opinions about this, but I think that my opinion is the same as that of nearly any doctor that you’ll ask. For example, here’s a what a couple of doctors have to say in a U.S. News and World Report article that’s specifically about MS and the flu:

Dr. Robert Shin, director of the Georgetown Multiple Sclerosis and Neuroimmunology Center: “The flu infection may stimulate the immune system, which may in turn trigger an MS attack.” Note that Shin says the flu, not the flu shot, is what should worry you. He says that getting the flu, or any illness, raises that chance that you’ll have a relapse or a worsening of your symptoms.

Dr. Amesh Adalja, an infectious disease specialist with the Johns Hopkins University Center for Health Security: “When you see flu outbreaks, you see MS relapses.” 

If you just think about what happens to your body in hot weather, or when you have a fever, then the flu-MS connection should be clear.

Docs sat the flu shot doesn’t give you the flu

Are you worried that getting a flu shot can give you the flu, or make you sick with something else? Doctors say don’t be. The flu shot uses a killed virus to protect you against the flu. So it’s highly unlikely that the vaccine will give you the flu. In fact, Dr. Shin says “infection really is impossible.”

On the other hand, the nasal flu vaccine is created from a live virus. The Centers for Disease Control and Prevention recommends against anyone using the nasal vaccine, because there are concerns about its effectiveness.

Since the flu vaccine takes about two weeks to become fully effective, it’s possible that some people who’ve had a shot will still get the flu. There have also been some years where the vaccine hasn’t been a good match for the strain of flu that was prevalent in those years. This may lead some people to believe that the shot gave them the flu when, in fact, it didn’t. It just, for whatever reason, failed to protect them from catching it.

For a lot more detail…

Here are a few places where you can obtain more information:

U.S. Centers for Disease Control and Prevention (CDC)

National Multiple Sclerosis Society

A “STAT News” story, with an international overview

Of course, you should always check with your own doctor.

We had our shots

My wife and I got our flu shots in October, just as we’ve been getting them for many years. Neither of us has ever had a problem.

 

(This post first appeared as one of my columns on http://www.multiplesclerosisnewstoday.com)

Specialty Drugs Mean Specialty Prices

If you have MS, you’ve probably used a specialty drug. My first was Avonex, which I began to use about 1998. Several others followed.
There’s no formal definition of a specialty drug, but these therapies have several things in common. First, they’re expensive. According to the vice president in charge of specialty drugs at CVS Pharmacy, the average monthly cost is $3,000. A CVS website article says that’s about 10 times the cost of a non-specialty medication. Many specialty drugs are hard to administer, requiring an injection or infusion. And it may require special handling. My Avonex, for example, had to be shipped with dry ice to keep it cool.
So, I’m not surprised that the cost of specialty drugs is so much higher than your average prescription med. What really does bother me, however, is how fast the cost of these specialty drugs has been climbing.

Let’s look at the numbers

A few weeks ago, AARP released a lengthy report that studied 101 specialty drugs. Here are the headlines:
  • The price of the most widely used specialty prescription drugs increased substantially more than the general inflation rate in every year from 2006 to 2015.
  • From 2014 to 2015, specialty drugs had their highest annual price increase in a decade: an average hike of 9.6 percent. Inflation, on the other hand, increased by only 0.1 percent.
  • Prices for 29 chronic-use specialty drugs that have been on the market since the beginning of the study (from January 2006 to December 2015) increased cumulatively by an average of 177.3 percent. In contrast, general inflation increased by only 19.4 percent during the same period.

MS drugs are best-sellers

Multiple sclerosis drugs made up 12 of the 101 specialty drugs studied. Their average price rose 10.8 percent between 2015 and 2016, a little higher than the group average. Seven of those dozen MS drugs made the study’s list of 30 best-selling specialty drugs. (You can see the full list on page 30 of the report.)

RANK BY SALES DRUG DOSE DAILY COST 2015-16 HIKE (%)
6 Copaxone 20mg $201 7.6
7 Tecfidera 240mg $194 10.8
11 Copaxone 40mg $179 7.0
16 Avonex Auto-inject $198 15.2
17 Avonex Pre-filled $200 16.2
21 Rebif 44mcg $207 10.8
27 Betaseron 0.3mg $202 11.1

The drug that jumps out at me from this list is Avonex. Why should the price of a drug that’s been in use for nearly 20 years jump 15-16 percent in a year? Copaxone and Tecfidera both lead Avonex in sales, yet their price hikes were lower. Color me confused.

What’s the solution?

Is there a way to limit these price increases? In the CVS article I mentioned earlier, Dr. Alan Lotvin makes several suggestions, most of which don’t work for me.

Lotvin: “… Prior authorization and step therapy can be highly effective in controlling costs.”

Me: Step therapy means reducing costs by prescribing older, possibly less-effective drugs first rather than aggressively attacking MS with newer, more potent drugs. Some insurance companies insist patients follow this path, but it’s not the way that I want my MS treated.

Lotvin: “Another approach is the use of tiered formularies that require higher patient cost-sharing for more expensive therapies.”

Me: Yes, they do. And this is why many MS patients can’t afford to pay for the therapy that could be the most effective for them (though there are drug company programs that help some patients pay for these drugs).

Lotvin: “Ensuring that the drugs are administered at the lowest-cost site of care is also important — in most instances the hospital outpatient center is the highest-cost site of drug administration, while patients’ homes and doctors’ offices are typically the lowest.”

Me: Here, we agree.

The AARP study concludes:

“If recent trends in specialty drug prices and related price increases continue, it will almost undoubtedly become more difficult for patients to access and afford necessary specialty medications. The pricing patterns (price levels and price increases) for specialty drugs will lead to serious problems with respect to access and affordability issues in the future.”

Since access and affordability are already a problem, it seems to me that the future is now.

Yet, AARP offers no solutions, ending its report this way:

“Policy makers interested in reducing the impact of prescription drug prices should focus on options that drive significant innovation while also protecting the health and financial security of consumers and taxpayer-funded programs like Medicare and Medicaid.”

Well, yeah. But how do we find those options? The FDA has now approved generics for Copaxone 20mg and 40mg. That’s not an innovation, but, hopefully, it will help stick a pin in at least one specialty price balloon.

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

Have You Been Switched from Generic to Brand Name?

 

Insurance companies want people to use generics, rather than the more expensive brand-name drugs, right?

Maybe not. Because, at least in some cases, they’re doing just the opposite. Some patients are being forced to use brand-name drugs even when those drugs have generic equivalents. It happened to my wife last week. Not surprisingly, that means that some of us with MS could wind up having to dig deeper into our pockets to pay for some therapies.

The New York Times recently published a long story about this relatively recent, and not widely known, practice. It points a finger at both insurance companies and drug manufacturers.

Here’s what’s happening

The Times story reports that some drug manufacturers are trying to fight competition from generic versions of their products by negotiating deals with insurers and pharmacy benefit managers. (Pharmacy benefit managers are companies such as CVS Caremark and Humana that actually run the drug plans provided by Medicare and private insurance companies.)

The deals require the drug plans to stop covering some generics and instead approve only their brand-name equivalents. In exchange, the drug companies sell the brand-names to the drug plans at a discount. But, the Times reports, the discount isn’t passed along to patients. The insurers or the drug plans pocket it and patients wind up paying more for these drugs.

The impact on MS drugs

This practice also is reported to be happening with some biosimilar products that compete with the new, expensive biologic drugs, just as generics compete with brand names. (A biosimilar is a product that is almost identical to an FDA-approved biologic drug. It’s supposed to have no significant differences in terms of safety and effectiveness, and there are only small differences in its components.)

A drug called Glatopa is a biosimilar for the daily MS injectable drug Copaxone. Two years ago, Glatopa’s manufacturer predicted that Glatopa would have a wholesale list price of about $63,000 a year. That’s about 15-18% lower than the list price for once-a-day Copaxone.

According to the Times, in December, CVS Caremark, one of the largest drug benefit managers, sent a memo to pharmacies telling them that some of its Medicare drug plans would cover only brand-name versions of 12 drugs. No more coverage for their generic versions. Copaxone was one of those 12.

Out-of-pocket costs are impacted by deductibles

A spokeswoman for CVS Caremark told the newspaper that consumers never pay more for a drug when Caremark favors a brand name over a generic. But it’s not simply a case of the cost of each prescription.

According to the story, 29% of Americans with employer-provided health insurance have a high-deductible plan. They would still be hit with higher out-of-pocket drug costs if they were forced to use generic drugs because, until their deductible is met, they’re often required to pick up the full price of brand-name medications. On the other hand, they’re charged only a small percentage of the price of generics before meeting the deductible.

Also, many plans pay for a larger percent of the cost of a generic drug than they pay for its brand name.

The bottom line

Pennsylvania pharmacist Robert Frankil, quoted by the Times, said, “There’s only one reason why they’re requiring you to use a more expensive product. Because somewhere down the road, somebody is earning more money.”

Frankly, I don’t know what we patients can do about all this. But I thought you’d want to know about it.

(A version of this post first appeared as my column in http://www.multiplesclerosisnewstoday.com).

Ocrevus, Hope and a Suicide Postponed

Several months ago, I wrote a column in Multiple Sclerosis News Today about Andrew Barclay.

Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years.

Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled to end his own life, with help, on June 15 at a suicide clinic in Switzerland. But he changed his mind.

Campbell has been writing about his MS for the Sunday Herald in Glasgow since late April. (He’s also the paper’s “Beer of the Week” writer.) He describes himself as “a man on death row,” and on May 20, his MS article began, “Well, unfortunately I am still alive.”

Campbell has mobility problems, and living in a second-floor flat has been tough for him. He says he’s had no support in getting ground-floor accommodations. He complains that he was recently discharged from a hospital without the possibility of receiving home care. He has no caregivers and exists on microwave dinners.

Campbell had hoped that a stem cell transplant would allow him to live a life that was worth living, but his neurologist told him that he thought HSCT would be too risky. So, at age 56, Campbell made plans to die.

Then came a glimmer of hope. In a column he wrote two days after he had been planning to die, Campbell explained that a former police sergeant named Rona Tynan gave him a reason to live, at least a little while longer.

“Rona, who also has multiple sclerosis, was of the opinion that I should not commit suicide until having tried every other possible avenue – including soon-to-be-available multiple sclerosis treatments for folk like me with primary progressive MS. Rona persuaded me, and I agreed,” Campbell wrote.

That treatment is the disease-modifying drug ocrelizumab, sold in the U.S. under the brand name Ocrevus. The U.S. Food and Drug Administration approved it a few months ago, and it’s the only drug approved to treat progressive MS. Some neurologists refer to it as “stem-cell lite” because of the way it attacks the rogue B-cells that are believed to cause MS. Ocrelizumab is expected to be available in Scotland later this year.

“For the first time since multiple sclerosis was identified during a post-mortem 149 years ago, there now seems to be a real hope of lasting risk-free treatment for multiple sclerosis sufferers within the next few years,” Campbell writes. “The timing could not have been more perfect — although there was a fear, of course, that the developments had just come too late for me. But I wanted to remain as optimistic as possible.”

Colin Campbell’s hope, now, is that Ocrevus will halt the progression of his MS and avoid a future that he pictures as becoming bedridden, needing help to eat and bathe, and using a catheter. He’s not sure how much hope he realistically should have, but he ends his June 17 column with: “Wish me well.”

That, we certainly do.

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

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