Wednesday, April 29, 2015

Through the Roof: The Unbridled Cost of MS Drugs

The rate of price increases of specialty drugs have outpaced those of traditional medications for years. For example, in 2014 the overall expense of specialty drugs increased 30.9 percent while traditional drugs increased 6.4 percent, according to the 2014 Express Scripts Drug Trend Report, published March 2015.

In the early years of MS drugs (1993-2002), prices remained stable. After Rebif was launched in 2002 with a price of $15,262, it took three years before the average price of MS drugs rose to $15,792 in 2005. Tysabri was relaunched in 2006 with a price tag of $25,850 after which it took about two years before the average price rose to $24,077.

2009 was the year that the overall cost of MS drugs increased a whopping 34.4 percent. After Extavia was launched at $32,826, it only took one year before the average price leveled to $32,625. The price of MS drugs had finally seemed to level out with little difference between the most and least expensive choices.

All hell breaks loose

When Gilenya was launched in September 2010, the patient community was outraged at the $50,775 price tag (or $48,000 depending on the source). It wasn’t long before the price of other MS drugs swiftly rose, closing the gap once again, as the overall expense of MS drugs increased 25.4 percent in 2010. However, the overall trend for MS drugs has slowed in recent years, even with the Aubagio ($47,651) and Tecfidera ($57,816) launches in 2012 and 2013, respectively.

The average annual cost for MS drugs is currently about $60,000 in the US.

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MS Drug Pricing Wars: A Race to Break the Bank?

Friday, April 24, 2015

To Complete Your Current Drug List: Add Contraindications

This past Monday I consulted my primary care physician (PCP) about a suspected urinary tract infection. I’d been feeling progressively not well, although I’ll admit that I’ve been burning the proverbial candle from every angle imaginable and have earned fatigue and increased MS symptoms. But after experiencing sudden leg weakness, I thought that it was time to take action. If infection was causing a pseudoexacerbation, there was something we could do about it.

My PCP prescribed an antibiotic which I started taking immediately. The next morning I had a routine appointment with my rheumatologist, during which I told her about the antibiotic (eg, Bactrim). My doctor’s eyes got BIG.

“You cannot, MUST NOT, take Bactrim when you are using methotrexate,” she says. “The combination can cause your blood counts to go to zero.”

Hmm. That doesn’t sound good. She told me to stop taking the drug immediately and to call my PCP. Then she discussed potential side effects of other antibiotics that might affect tendons and what I should do if I experienced problems.

Just like I’ve created a detailed list of medications for my mother—including those drugs she cannot use—I need to do the same thing for myself. If I had had this information in front of me on Monday, it would have been easy to ask for an alternative antibiotic on the spot. I know that my doctor did check for drug interactions, but perhaps the extent of a potential interaction is recognized as being more serious by one doctor than another.

A complete drug list should include:

  • Brand name
  • Generic name
  • Dose and frequency
  • Reason prescribed
  • Prescribed by whom
  • Any medications to avoid, and why
  • Date of last update to list

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Don't Try to Remember EVERYTHING!

Saturday, April 18, 2015

Glatopa: Generic Copaxone Approved by FDA

Before lengthy legal battles between Teva Pharmaceuticals and drug manufacturers eager to claim a portion of the lucrative MS drug market have been completely resolved, the FDA announced late on Thursday, April 16, 2015, approval of the first generic version of Copaxone (glatiramer acetate injection).

Sandoz, a subsidiary of Novartis, has received FDA approval to market Glatopa, a generic version of glatiramer acetate in a 20 mg/ml daily injection. Developed in collaboration with Momenta Pharmaceuticals and produced entirely in the US, Glatopa is indicated for the treatment of patients with relapsing forms of MS, including patients with clinically isolated syndrome.

Mylan Inc, in collaboration with Natco Pharma Ltd, is also working on generic versions of Copaxone. I say versions, plural, because last August 2014, Mylan, Momenta and Sandoz announced that the FDA had accepted their ANDAs (abbreviated new drug application) for three-times-a-week generic Copaxone.

“Health care professionals and patients can be assured that FDA-approved generic drugs have met the same rigorous standards of quality as the brand-name drug,” said Janet Woodcock, M.D., director of the FDA’s Center for Drug Evaluation and Research. “Before approving [Glatopa], given its complexity, we reviewed additional information to make sure that the generic product is as safe and effective as the brand name product.”

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FDA Approves Glatopa (aka generic Copaxone) for Relapsing MS

Friday, April 17, 2015

Ask Congress to Sponsor the #NeuroData Bill

The Neurological Diseases Act of 2015:

  • Requires the Centers for Disease Control and Prevention (CDC)
    • to enhance and expand infrastructure and activities to track the epidemiology of neurological diseases; and
    • to incorporate information obtained through such activities into a statistically-sound, scientifically-credible, integrated surveillance system, to be known as the National Neurological Diseases Surveillance System.
  • Requires the Department of Health and Human Services (HHS) to ensure that the System facilitates further research on neurological diseases.
  • Requires HHS to provide for the collection and storage of information on neurological diseases, including the incidence, prevalence, and other information, such as demographics, risk factors, diagnosis and progression markers, to the extent practicable.
  • Requires HHS to provide for the collection and storage of information relevant to analysis on neurological diseases, including epidemiology, natural history, and prevention of the diseases; the detection, management, and treatment approaches for the diseases; and the development of outcomes measures.
  • Requires HHS to consult with individuals with appropriate expertise, including clinicians, epidemiologists, research scientists, health information technology experts, and representatives of national voluntary health associations that focus on neurological diseases and have demonstrated experience in research, care, or patient services.
  • Requires HHS to make information and analysis in the System available to federal agencies and to the public, including researchers; and to ensure that privacy and security protections applicable to the System are at least as stringent as the protections under the Health Insurance Portability and Accountability Act (HIPAA).
  • Authorizes Congress to appropriate $5,000,000 for each of fiscal years 2015 through 2019; and allows HHS to award grants to, or enter into contracts or cooperative agreements with, public or private nonprofit entities to carry out required activities.
  • Requires that HHS submit a report to Congress within 4 years of enactment that shall include information on: the development and maintenance of the National Neurological Diseases Surveillance System; the type of information collected and stored in the System; the use and availability of such information, including guidelines for such use; and the use and coordination of databases that collect or maintain information on neurological diseases.

Please ask your elected officials to cosponsor and support increased research of neurological diseases.

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Encourage Congress to Support Research of Neurological Disorders

Monday, April 13, 2015

Multiple Sclerosis Cooling Programs

Multiple sclerosis advocacy organizations want to help you deal with the summer heat and provide free cooling equipment to those who meet eligibility criteria. Different types of cooling vests, neckties, wristbands, bandanas, baseball hats, and more are available. The time to apply for these programs is RIGHT NOW as supplies may be limited.

The Multiple Sclerosis Foundation Cooling Program opens each year on February 1st and continues through June 1st. Applications, which require income verification and a doctor’s note, can be submitted online or by postal mail. Applications are confidential and must be reviewed by the grant committee. Visit the MSF Cooling Program website or call (888) MSFOCUS (673-6287) for more information.

The Multiple Sclerosis Association of America Cooling Equipment Distribution program provides cooling equipment to both adults and children living with MS. Download the appropriate application from the MSAA website; return application materials and required documentation, including income verification and a doctor’s note, to the MSAA program coordinator by postal mail. For more information, visit the MSAA Cooling Equipment website, call (800) 532-7667, or email

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Free Cooling Equipment for People with MS -- Apply Now!

Saturday, April 11, 2015

What is "The Cure"?

If you had asked me what The Cure was in college, I’d say an English rock band that was fun to listen to because their music was SO DIFFERENT from the classical music of Bach, Beethoven, Brahms, Chopin, Czerny, Debussy, Mozart, Prokofiev, Strauss, Tchaikovsky, Kabalevsky, and more, I studied and performed every day while in music school.

If you had asked me what The Cure was just a few years ago, in reference to multiple sclerosis, I’d say a treatment that got rid of MS for good, transforming an incurable disease into a curable one through some amazing mode of action that worked for everybody stricken with this bizarre and relentless disease that frequently wreaks neurological havoc. Basically, I pictured no new attacks or damage, ever.

If you ask me what The Cure is today, I would first ask what YOU mean by cure — because we each have different ideas and opinions on these types of issues.

When I picture what the cure for MS might look like, I think of something that not just stops disease progression, but which reverses the damage that MS causes to the central nervous system. Complete eradication of the disease may be a successful cure. But look at diseases such as measles which was supposed eradicated from the US in 2000, it has come back due to lapses in vaccination practices. However, MS is quite different than the measles so that’s not a fair comparison.

Does remyelination equate “cure” in your book?
In thinking of my own experience with MS, my current disease-modifying treatment seems to have practically halted disease progression in recent years. Certainly I still experience many MS symptoms, especially the kind that get worse when I’m not feeling well, overheated, fatigued, or sick. I have damage that will likely never improve.

However, this overall improvement of my MS didn’t happen immediately; in fact, I used pulse steroids during the first year after switching medications because things just wouldn’t calm down. I even had some relapses about the same time I was due for a round of infusions but had been putting it off.

But once I got on a regular pre-emptive schedule with the infusions, things began to get better. I regained strength and function and haven’t had a major relapse in four years. My MRI scans are stable, even improved from two years ago. No new lesions in the brain or spine, and my cervical lesions have become smaller.

It’s not a cure, but definitely a huge success in my estimation. To be “cured” of MS, I would like to not experience any significant residual damage from previous attacks. I would like to experience complete remyelination. What my body has done on its own is great, but I’d like to see more.

So that’s what I would like to see as the cure of MS — no disease activity, no symptoms, no neurological damage, no signs of MS whatsoever.

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What is the MS Cure?

Thursday, April 9, 2015

Does Vein Finder Technology Lead to Fewer Needle Sticks?

How does vein visualization technology work?

Several different companies produce devices designed to help find veins. A quick Google search shows that you can order your own device from Amazon or Ebay if you wanted to. There is even a DIY video on YouTube that teaches how to make your own device for under $50.

I’ve personally seen three different devices in action over the years. Each one worked in a similar fashion using LED infrared light. Hemoglobin in the blood absorbs infrared light; so when the device is held above the skin, veins appear in contrast to surrounding tissue (either darker or lighter depending). At least one company has taken the technology a step further and projects a digital image of the veins back onto the skin.

I have to say that even with vein visualization devices, nurses have to rely upon their skills, and a bit of faith, to access veins that simply cannot be seen by the naked eye or infrared light. These devices do not magically make the process simple. So often with me, the vein finder simply provided confirmation that there were indeed NOT sufficient veins in the area being searched.

One of my favorite moments was when someone pulled out a keychain with an infrared light on it to quickly peek under my skin. It wasn’t as powerful as the portable, handheld devices that are commercially available, but it did seem to work to find a few veins in a small area. I should have asked where he got the keychain; maybe it’s worth carrying something like that around in your purse just for those pesky IV/blood draw situations if you are a hard stick.

Have your healthcare professionals ever used a vein finder with you? Did it seem to help?

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Are Vein Finders the Answer to Fewer Needle Sticks?

Wednesday, April 1, 2015

Numbness as a Sign and Symptom of MS

Numbness is often associated with other symptoms such as tingling (pins-and-needles), weakness, pain, difficulty walking, and increased risk of falls. When a person experiences complete numbness (anesthesia), delayed reaction to harmful situations such as deep cuts or exposure to hot temperatures can be dangerous. You must always remain vigilant.

What causes numbness?

Sensory information travels along nerve pathways. Disruption anywhere along these pathways can cause numbness or other sensory alterations. Common causes of numbness include demyelinating disorders such as multiple sclerosis, strokes, vasculitis, nerve compression, infections, vitamin deficiency, toxins or drugs, diabetes, or hereditary neuropathies.

How is numbness clinically evaluated?

Because there are so many possible causes of numbness, evaluation is done methodically. The doctor must determine which part of the nervous system is involved. Then, the doctor takes a thorough medical history to determine a differential diagnosis (ie, possible cause). Describe the numbness; when did it start; how long does it last; where is it located; are there other neurologic symptoms; do you suspect a possible cause such as recent trauma or infection?

A review of systems will help to identify other symptoms of disorders that may explain the numbness. Examples include back or neck pain (caused by arthritis or spinal cord compression), fever or rash (infectious neuropathy), joint pain (rheumatic disorders), headache (brain tumor or stroke), undernutrition (vitamin B12 deficiency), or excessive consumption of high-mercury seafood (polyneuropathy).

Past medical history is considered, as well as family history of neurologic disorders. A complete neurologic exam helps to determine the location and extent of the numbness and identify neurologic deficits in related reflex, motor, or sensory function. Testing may include laboratory tests, nerve conduction studies, magnetic resonance imaging (MRI), or CT scans.

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MS Signs & Symptoms: Numbness