You can see a recording of this afternoon’s live stream on the MS News Today Facebook page here. I’m sharing my experiences with various DMDs that I’ve used over the past 20 years or so.
With the recent approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “but how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it can still mean a higher co-pay than some patients with insurance can afford. And it can appear to be totally unaffordable for those without coverage. Unless you know how to get help with those drug costs.
About six months ago I wrote about the programs that various drug companies and foundations have to assist MS patients in paying for their drug. With lots of folks looking for that help I thought it would be a good idea to review some of what’s out there.
Payment help from MS drug manufacturers
In the U.S., many drug companies have programs to provide their high-costing MS drugs to patients at a deep discount or, in some cases, for free. For Ocrevus, drug manufacturer Genentech has a number of options. For other MS drugs, the National Multiple Sclerosis Society has an excellent, drug by drug, list of these programs on its website. I recommend checking it as a first stop in your search for help.
But there are rules regulating this practice in the U.S. and they don’t make a lot of sense from a patient’s viewpoint. Here’s how they work. If you have prescription drug insurance, either through your employer or as an individual, a drug company is allowed to reduce the amount of your co-pay for their drug. When I was still working full-time, I was prescribed the drug Ampyra. At that time the average wholesale price for a 90-day supply of Ampyra was about $1,000 a month. My insurance covered about 50% of that, so I was left with an unaffordable co-pay of about $500 a month for a drug that was really helping me walk. Fortunately, I was able to take advantage of Acorda’s patient assistance program to limit my co-pay to no more than $40 a month, and I was able to continue on that drug.
Then I retired and moved from my employer’s drug insurance plan to Medicare Part D (the section of Medicare that pays for prescription drugs). But, under the Medicare rules, drug companies aren’t allowed to pay-down the co-pay, as they do with private insurance. They must either provide the drug totally free of charge to a patient or they can’t provide any assistance at all. And, to receive that no-cost benefit the patient’s income must be under a certain limit. My retirement income was too high to get the drug for free, but I still couldn’t afford the big jump from a $40 co-pay to $500 a month, so I had to go off the drug.
But, there’s another way …
Help from foundations
A foundation is the good place to turn when you have private insurance or Medicare, you’re still stuck with a high co-pay and the drug company is unable to help. It takes patience and good timing to obtain help from these non-profits, 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 co-pays and be paid directly to the pharmacy that’s providing your drugs for a specific amount of time, usually a year.
At one time I was receiving a grant of $6,000 a year from a foundation which covered all of my co-pays for Aubagio for that year…a significant out-of-pocket savings. Some of these foundations limit their grants to people on Medicare, while others also include patients with private insurance. A list of some foundations that will pay for MS drugs can be found at the bottom of the National MS Society webpage that I mentioned earlier.
You’ll need patience and good timing to travel this route. The foundations help patients with many different diseases and they can quickly run out of money for a specific disease until new donations are received. The problem is, the foundations don’t announce when their coffers are replenished. So, you need to check their websites, or call them, as frequently as possible to see if they have new money, and then apply quickly when they do.
[This first appeared as my column on http://www.multiplesclerosisnewstoday.com]
Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher share of the market at the end of 2016 compared to 2015. Tecfidera was at the top of the pills list with Aubagio gaining ground. But, final FDA approval of the infusion drug Ocrevus (ocrelizumab) could be a game-changer in the pill-shot-infusion decision.
Neurologists and many MS patients are very familiar with Ocrevus. There’s a lot of chatter about it in online MS gathering spots, and many doctors report they intend to use it as soon as it is approved. And, even though most of the “buzz” is about prescribing Ocrevus for PPMS patients, it’s expected that a lot of doctors also are looking at it for those with RRMS. It could push ahead of other infusions, such as Tysabri and Lemtrada. as well as oral meds such as Tecfidera and Aubagio. Spherix reports more than one third of the neurologists it surveyed said they would have been likely to have started patients on Ocrevus, rather than on Tysabri, had it been available.
Weighing the treatment options
What drives these drug decisions? According to a Spherix report RealWorld Dynamix™: DMT New Starts in Multiple Sclerosis, the drivers include clinical considerations such as safety and efficacy, as well as non-clinical concerns including patient requests and the policies of the insurance coverage of those patients. Interestingly, it appears that neurologists are becoming more comfortable using high-efficacy DMTs right away for patients with aggressive MS, rather than working up to them from drugs with lower efficacy, but lower risk or cost.
Be involved in the decision
As the patient you should take an active role in your drug selection. A Spherix report released last fall showed that newly diagnosed MS patients are doing their research about DMTs. One in five of them are asking their neurologists about specific MS drugs. Those doctors say that 27% of their patients have a high degree of involvement in choosing the DMT they will use, 43% have moderate involvement, and 30% only low involvement. Unfortunately, more than 50% of the neurologists surveyed say that they, alone, choose the DMT the patient will use. About a third say they present a few choices, and then let the patient decide. Only 10% of the docs say they present all of the options and then let the patient decide.
How did you decide which DMT to use? Are you thinking about changing?
[This is an updated version of my column that first appeared on http://www.multiplesclerosisnewstoday.com]
The final drip of my first week of Lemtrada infusions will drop in about 30 minutes. The headline is: It was a good week with no significant problems or discomfort. I’ll be writing about this experience, in detail, in my next column. But first, for those who aren’t yet up to speed on my journey, some background.
A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis and is also being used by some people who have the progressive forms. There have also been many reports of some people who have had some symptoms improved. But, I was writing about those reports. Now, it’s personal.
Treatment Starts Before the IVs
Two days before my first infusion I began to pre-medicate to reduce the chance of some side-effects. I’m taking Acyclovir to reduce the chance of contracting the herpes virus. Doctors say that Lemtrada treatments raise the chance of getting this virus for some people. The allergy drugs Zantac and Zyrtec are being taken to limit hives and rashes. I also have on hand ibuprofen, Benadryl and hydrocortisone creme to use, if necessary, to treat any pain, rash, hives or any increased temperature.
The five days of infusions involve three drugs. First comes Solumedrol. My neurologist tells that it serves two purposes. As a steroid it calms the body’s immune system. But it’s also a histamine blocker, serving as another guard against hives, rashes and the like. I’m to receive 1,000 mg on the first three days, 500 mg on the second fourth and 250 mg on the final day.
Next comes 25-50 mg of Benadryl by IV. Finally, the star of the show…the Lemtrada – 12 mg over four hours. Oops, not done yet. After all the drugs there’s a two hour “watch” period, during which IV fluids continue. In all, 7-8 hours each day. Whew!
For the next several months I’ll be drinking lots of water. (That’s going to be tough for this MSer who has spent the past 35 years trying to avoid water). My neuro, and most “Lemmies” who’ve had these infusions, say it’s the best thing to do to limit uncomfortable side effects. Flushing the toxins and dying cells out of my system, they say, is the best approach to feeling as good as I can.
Watch What You Eat
There are also foods that I’ve been told to avoid for the first month after my infusions. This is to reduce the risk of listeria. They include:
- Hot dogs and deli meats (This will be a hardship).
- Refrigerated pates and meat spreads.
- Unpasteurized milk and dairy products.
- Soft cheese made with unpasteurized milk, e.g. Feta, Brie, Queso Fresco and Camembert
- Raw sprouts
- Smoked seafood
- Raw fish, e.g. sushi (I wouldn’t, anyway).
- Raw eggs or meat
- Prepared salads, e.g. chicken salad, ham salad and egg salad.
- Wash all vegetables and fruits thoroughly
And After the Infusions
For a time I’ll be continuing the meds that I began before treatment started and I’ll be taking Prednisone to taper off the IV steroids.
I’ve been told to expect a roller coaster ride of good and bad days for a week or two – headache, body aches and fever – some days feeling like I’ve crashed and burned and others where I’m feeling well. After a month I’ll be scheduling physical therapy. After four or five months I’ve been told that I should see an improvement in my overall endurance.
That’s quite a ride for a 68 year old guy to anticipate but, as I’ve said several times in writing about Lemtrada, the potential benefit makes the risk and discomfort worthwhile.
So, my fingers are crossed. Unless I’m really dragging, and at the bottom of the roller coaster loop, I’ll be reporting on my ride in about another week.
(This first appeared as my column on www.multiplesclerosisnewstoday.com)
Dear Lauren Parrott,
I know you’re scared. The fears that you shared in your video blog ring true to any of us who have faced the unknowns of a new MS medicine.
I’ve been there.
I’ve gone through three major multiple sclerosis drugs over the 35+ years that I’ve been fighting MS. I was a subject in the clinical trial of Avonex; in other words, a guinea pig for a brand new drug. Was I nervous? You bet! But my neurologist, who sounds like your Dr. Rossman, was someone who I trusted. So, I went onto that drug for several years and it helped. My reward was worth my risk.
Then I moved to Tysabri and finally to Aubagio. As you know, Tysabri is a drug with the a very serious potential side effect; the sometimes fatal brain disease Progressive Multifocal Leukoencephalopathy, or PML. But both it and Aubagio have helped slow the progression of my MS. Again, the reward was worth the risk.
In December I’m going to switch drugs again. I’ll be starting Lemtrada. I don’t think that I’ve ever been “scared” about any of my drug therapies but, for some reason, I am a little nervous about this one. Maybe that’s because some of the people using Lemtrada have reported some very uncomfortable side effects, and I’m a wimp when I don’t feel well. But, I’m determined not to allow my nerves to prevent me from taking advantage this drug. The potential reward, that some of my MS symptoms might be reversed, seems far greater than the risk that’s involved.
My neurologist has told me “the buzz is good” about your new drug, ocrelizumab. The investing web site Motley Fool calls it “the revolutionary Multiple Sclerosis drug you’ve never heard of.” Ocrelizumab, which Genentech hopes to market under the name Ocrevus, is special because it’s designed to treat primary-progressive, as well as relapsing-remitting, MS.
I’m sure that Dr. Rossman wouldn’t have recommended ocrelizumab if he didn’t think that the drug was right for you. Even though he’s no longer able to be at your side through this trip you can count on other MS patients, like me, to walk down that road with you. We’ll try our best to help you through the risks that scare you so that you have a chance to reap the rewards.
(This is an updated version of my column that appeared earlier this month on www.multiplesclerosisnewstoday.com)
My neurologist calls Lemtrada “HSCT lite.” She says that not only is the drug able to reduce exacerbations and limit the overall progression of Multiple Sclerosis, it’s actually reversed some symptoms in some of her patients. I guess I’m going to find out if she’s right about Lemtrada because I’m getting ready to start using it.
Lemtrada Targets MS-related Cells
Lemtrada, which carries the generic name alemtuzumab, was originally approved by the Federal Drug Administration, at a much higher dose, to treat B-cell chronic lymphocytic leukemia. The drug is a humanized monoclonal antibody which seeks out and destroys specific immune cells that carry a protein called CD52. These are believed to be the white blood cells that attack the central nervous system in people with MS. After those cells are removed, the body manufactures new white blood cells that don’t carry the MS-related protein. Thus, the similarity to stem cell replacement therapy. That therapy uses chemotherapy to destroy most of the body’s immune system cells. Then, fresh stem cells are infused into the body which, over time, create new white blood cells.
Unlike other Disease Modifying Therapies (DMTs), which require injections every few days or monthly infusions, patients receiving Lemtrada are treated once a year, for two years. The first year the drug is infused daily for five days in a row, on an out-patient basis. Each infusion takes about four hours and the patient is watched for another two hours afterwards. A year later that process is repeated, but for only three days. And that’s it. (In a few cases patients have undergone a third round of infusions).
In a study, conducted by researchers at Queen Mary University of London and published in the October, 2016 issue of Neurology, nearly half the patients treated with alemtuzumab (Lemtrada) showed improvements in all 7 functions on the EDSS functional scale two years after treatment began. (EDSS functions include things such as limb movement, numbness, speech and bladder and bowel functions). Those results, the researchers write, “suggest that such disabilities may often be reversible (at least partially) in patients with active RRMS if they receive suitable therapy, irrespective of the type of baseline functional deficit.”
My own neurologist tells me that one of her wheelchair-bound patients has regained some walking ability. There are stories about similar mobility improvements by patients who have commented on the Facebook page “Lemtrada for MS Treatment.” And, there are also stories there from patients who saw no improvement. It’s worth a look by anyone considering using this drug.
There are Risks
This treatment is not without serous risks. They include autoimmune problems that could result in severe bleeding or kidney problems, serious infusion reactions and an increased chance of getting certain types of cancer. Patients receiving Lemtrada are required to have their blood and urine tested monthly and they’re monitored very carefully for as long as four years.
Some patients are also reporting side effects during and after the infusion. These can include fatigue, headaches, hives, a fever nausea and leg pain. Many of these are being reported on the “Lemtrada for MS Treatment” Facebook page
Anyone considering Lemtrada will have to have a discussion with their neurologist and then determine whether the possible benefits of this treatment outweigh the risks. For me, the balance falls on the side of the potential benefits. My first series of infusions is scheduled for the first week in December and I’m sure that I’ll be writing at least one column that week with an IV stuck in my vein. Stay tuned.
It’s no fun jabbing yourself once-a-day if you’re using the multiple sclerosis drug Copaxone. I, eventually, hit a brick wall self-injecting when I was using Avonex and that was just sticking myself once-a-week.
But now Teva Pharmaceutical has what should be good news for Canadians using Copaxone. Health Canada has approved a three-times-a-week version of the drug. Three-times-a-week Copaxome 40 mg/mL is expected to become available to patients there, by prescription, later this fall.
Teva Pharmaceutical says Copaxone 40mg.mL is indicated for the treatment of patients with relapsing remitting multiple sclerosis (RRMS). It’s injected subcutaneously and those injections should be spaced at least 48 hours apart.
In addition to the newly approved dose, daily Copaxone 20 mg/mL will continue to be available.
Tri-weekly Copaxone already available in U.S. and Europe
Three-times-a-week Copaxone was approved by the U.S. Food and Drug Administration in January, 2014. Teva Pharmaceuticals says as of last June about 61,500 MS patients were using the drug in the U.S. In Europe, the MHRA and other EU member states issued a positive assessment report under the decentralized procedure in December 2014, and since launch, three-times-a-week Copaxone has been prescribed to more than 36,000 patients.
The Health Canada approval was based primarily on data from a Phase III study, which was the largest Copaxone clinical trial to date. It included more than 1,400 patients.
Many different MS drugs available for injection
Copaxone is one of several disease modifying drugs available to treat Multiple Sclerosis. Others, approved for use in the Unite States and listed on the National MS Society’s web site, include:
- Avonex (interferon beta-1a)
- Betaseron (interferon beta-1b)
- Extavia (interferon beta-1b)
- Glatopa (glatiramer acetate — generic equivalent of Copaxone 20mg dose)
- Plegridy (peginterferon beta-1a)
- Rebif (interferon beta-1a)
- Zinbryta (daclizumab)
That web site also includes an excellent list of all of the drugs approved for treating Multiple Sclerosis exacerbations and managing MS symptoms.