Official Channels & Protocol

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Back in March I had someone online comment about how one of the world’s largest financial rating organization was now offering a service to assist medical providers rate the adherence of their patient population to their medications. The concept was intriguing and alarming and I used the ‘contact us for more information’ portion of their website, requesting information.  Straight up I said I was looking for information to write a blog on the topic.

The contact person and I played phone tag and email tag back and forth from March until July for a variety of legit reasons on my part.  When we finally spoke by phone in July he was great, informative, and helped to answer my questions as to how this very large company, which normally rates financial risk could be in the medical risk market.  It was explained to me that this was more a service of providing the analytics for a provider, such as Medicare, to use to assess risk and they do not maintain medical databases.  What was done with that information was unclear to him after the programs are delivered to their client.

I wrote the blog, allowed this nice person to read it and he requested his name be removed because it wasn’t his official position to comment.  I complied with his wishes, the article posted with just a few of his quotes attributed to ‘a person at’ and then the next day I received a not so kindly worded email from the PR firm for the financial giant, demanding to know the name of the person I spoke with.  I offered them that information after first offering to allow my contact to do it for himself.  The PR person curtly pointed out I had not followed official procedures and had somehow violated something with their protocols.  Huh?

Then today, in another email follow-up from a different suit at the parent company, I was told I need to edit the blog, take all of the quotes out since this person was not authorized to speak for their company, there are strict rules and protocol to follow, and that I was to send them a copy of the revised article before it was published.   Again, huh?  Is that really how this works? And BTW, it was already published and you know what they say about the internet – once it is out there, it never can really go away.

If you read my blog (as of now it is still posted)  you will find that there is actually little focus on this leader in the financial rating industry  except using a simplified explanation of their medical adherence analytics system as the springboard for the rest of my article, focusing on the larger problem of adherence and its cost to our medical system in the US. If I were them I would have said no harm, no foul and let it be, but of course I am not this behemoth corporation.

At this point I am even more curious as to what medical adherence scoring service really offers if it has raised such interest in a simple MS patient blog.  If anyone can offer insight, I would love to hear it.  That is unless you happen to work for FICO,  because I wouldn’t want to violate any more protocols.

 

As always,

Laura

 

 

 

 

 

 

LTD and Me

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It was a most curious conversation I had the other day with the latest ‘expert’ at the company that is handling my long-term disability (LTD) claim.  It was a new case worker and first we had to clear the usual hurdles and introductions.  Then the conversation went pretty much like this-

Expert: So, how are you doing?

Me: Ok, there are good days and some not so good days, (I reply, trying to be pleasant rather than dump on her about the latest physical woes.)

Expert: That means you are better?

Me: Umm, do you know anything about multiple sclerosis? (Trying to be respectful)

Expert: Well I have read some and I know it is a disease that comes and goes with relapses.

Me: well not exactly.  Yes, it has periods of relapses and remissions but MS never goes away.

Expert: I know there isn’t a cure for MS but people do get better, right?

Me: unfortunately that’s not quite how it works and I’m happy to send you some information if you would like to learn more. (I’m wondering, what has she been reading?)

I was hoping to move the conversation on before I became entirely frustrated and said inappropriate things, after all this is the person determining if my LTD continues or not. I understand their job is to get people back to work, regardless of what that might take and what kind of work it would be.  I try to be patient with her questions because I know she is just doing her job.  But each time I am on one of the telephone reviews, when I get asked about the use of my hands, I picture myself being trained to flip burgers; never mind that I have no stamina to stand for long periods of time.  They no longer want to ask about my walking. Or my fatigue.  Or any of the other things that factored in to my stopping full-time employment.

That’s ok, I guess – they are doing their job, and since I can no longer do mine their job is to get me onto Social Security Disability Income (SSDI) and out of their company’s pockets.

Expert: So I see you applied for SSDI , how did that go?

Me: I have other income sources and do not qualify for SSDI based on my income.

Expert: I have lots of people who are making $100,000 or even $200,000 a year and still get SSDI.  How much you make doesn’t matter.

Me: (all efforts to play nice end here) – uh, you might want to check that again because there is a limit and no one making $100,000 a year will get SSDI.  SSDI is meant to be a backup for people who have no or little income.

Expert: I am sure you can make that much and still get it.

Me: I would again urge you to check this because I am certain. If you have people making $100,000 a year and still getting SSDI, I would like to know how.

Expert: I guess I should look into this.

Me: (I won’t print what i was thinking about this comment!).

And the conversation pretty much ended there. I anticipate their next review call  will be in a few short months, when I can again expect to answer ‘are you better now?’  If it’s the same case worker, I hope the expert will have done some homework about both SSDI and MS.

 

 

 

Night and Day

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No, I’m not talking about the phases of the sun and moon, but the differences between the two major conferences I attended in June.  First up was the Consortium for MS Centers (CMSC) and my month ended with DIA 2016, the annual conference for the Drug Industry Association.

#DIA2016 was infused everywhere with the words ‘patient engagement’ while I saw very little of this labeling at #CMSC16.  What I saw and heard was just the opposite – almost every piece of #CMSC16 was about patients and there was no need to proclaim anything about patient engagement in the process.  I would have liked to see more people affected by MS as part of their formal program, but there was no doubt to me the entire meeting of #CMSC16 was about the patient and their caregivers.

#DIA2016 was the opposite – I found little evidence of the patient voice in the presentations or elsewhere.  The purpose of this major meeting of the drug industry was clearly about all phases of the development of drugs, but how patients were engaged in any of this remained a fairly vague concept. Do you know the phrase lip service? – this is exactly how the #DIA2016 experience felt to me in the large picture.

On a  brighter note, but also  on a  much smaller scale at DIA, their leadership does seem to honestly have the desire to be true to this concept of patient engagement and as such, they have a wonderful asset in Elizabeth Lincoln, as the Director of Global Engagement.  Elizabeth was in charge of preparing our class of DIA Patient Fellows for this event, and she has been a constant voice about patient engagement being central to their processes.   The leadership of DIA has encouraged the patient fellows to remain involved after the convention, and to submit ideas for presentations in 2017.  The challenge for DIA is to insist that all of their presentations include patients on the panels of experts and not just the ones constructed by patient advocates.

There are lessons for DIA to learn from attending conferences such as CMSC, where the patient is at the center of every piece of conversation. I recognize this is a major shift in thinking for the drug industry to undertake, but if they want to offer more than lip service to the idea of patient engagement, it would be a useful first step.  The flip side of this is the patient advocacy organizations and those of us who have attended DIA or anyone else who is interested can help this process by joining DIA and contribute to their patient engagement discussions. I’m in …. How about you?

 

 

Surviving June

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June was bustin’ out all over
…. much like the show tune from Carousel, my June was full of excitement and lots of activity.

I started the month in Washington DC for the Consortium for MS Centers annual meeting.  It was a wonderful conference and I appreciate the extra efforts everyone made to accommodate me and my scooter.  The bad news was I woke on the last day with a pain that turned out to be shingles, and I am still suffering from serious neuropathic pain.

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I took a pass on another PCORI meeting trip in June, due to the shingles.  Resting up was the best medicine for me and I tried to be smart about that.

The good folks at Ohio Health, where I go for my MS treatment, hosted a patient education event and I had the good fortune of being asked to moderate these two programs.  It was my chance to talk about patient engagement – how we can be the leader of our own health care, and of course a few plugs for iConquerMS™.  The program details were handled by Stuart Schlossman and the team at MS Views and News.

Dr. Aaron Boster with MS Views & News founder Stuart Schlossman

Dr. Aaron Boster with MS Views & News founder Stuart Schlossman

I traveled to Philadelphia at the end of the month for DIA Global meeting. I was there as a patient fellow and learned a lot about that side of the pharma industry, including they weren’t particularly accommodating to patients, especially ones who were using a mobility scooter to get around. However I didn’t care because this is one gigantic complex and I needed that extra edge. I left on Saturday, and  returned home Thursday  to wrap up my month of June.

DIA

My new column, Engaging Thoughts, on Multiple Sclerosis News Today, debuted the last Monday of June. You can find the intro at http://multiplesclerosisnewstoday.com/category/engaging-thoughts-ms-blog/ as well as my first weekly column.

engaging thougths

The month didn’t seem so busy and crazy to me as I went through the days but looking back I can clearly see my June was bustin’  out.  I wonder what I can cram into July.

be well,

Laura

 

OhioHealth MS Clinic Education Programs

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I had the opportunity to moderate MS education programs recently, sponsored by  the OhioHealth MS Clinic. I am a patient at this clinic and enjoyed being able to share my experiences as well as talk about ways we can get involved with our own MS care. I opened the program with my presentation on patient empowerment and shared ways people can be proactive with their health needs.

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The program included talks from members of the OhioHealth MS Clinic team of physical therapists, occupational therapist, social worker, incontinence therapist and of course Drs. Jacqueline Nicholas and Aaron Boster.  Dr. Nicholas talked about Women’s Issues in MS, with a focus on pregnancy and how women have a different course of MS than men.  Dr. Boster presented How MS is Like a Leaky Swimming Pool, incorporating a newer theory from Dr. Stephen Krieger on how MS might be different than previously thought.

Dr. Jacqueline Nicholas speaking on Women's Issues in MS

Dr. Jacqueline Nicholas speaking on Women’s Issues in MS

These programs are a new presentation offering from MS Views and News – they coordinated the details for the program (venue, reservations, meals, etc) and OhioHealth decided on the speakers and program content.  OhioHealth was the financial sponsor of the program.  No pharmaceutical industry dollars supported the program, but there was a small display area and the various companies were invited to participate and share their information in an exhibit area separate from the speaking venue.

Dr. Aaron Boster with MS Views & News founder Stuart Schlossman

Dr. Aaron Boster with MS Views & News founder Stuart Schlossman

 

 

 

 

 

 

 

 

 

 

A key point that was not just talked about, but demonstrated at these talks is OhioHealth has established a comprehensive MS care center.  What might that mean?  All the services we might possibly need as a person with MS are located at their center meaning we don’t have to travel to different sites for services – this includes:

  • Neurologists who specialize in MS
  • Infusion clinic staff, specifically trained for MS
  • Physical, occupational and speech therapists
  • Social worker knowledgeable on accessing services
  • Wheelchair/equipment fitting and repair workshop
  • Patient events on site
  • And more that I am overlooking

There were speakers from these areas and others who came to observe and also to support the programs.  Even Tisha, who handles the paperwork for patient assistance programs, came the second night to be a part of the team.  Even if they weren’t on the stage speaking, the team presence was in the room.

I am waiting to hear the results from the participant surveys that were distributed at each program, and how these programs may be improved.  It was an honor to be a part of this program and I hope the participants went home with new information and accepted the challenge to be engaged with their providers and with my favorite project iConquerMS™.

 

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Congratulations go out to Stuart Schlossman and the MS Views & News organization for facilitating a great program, and offering their services to clinics such as OhioHealth.  I hope other agencies will see the value in having the details of MS education programs handled by this group.

The program was presented on two nights at locations north and south of Columbus; there will be additional MS education programs sponsored by OhioHealth MS Center in locations west and east of the city in October 2016.  OhioHealth MS Clinic staff is forward thinking, wants to include more for the people they serve and deserve recognition for this great step in education all of us.

be well,

Laura

 

 

 

 

Valuing Advocacy and MS Patient ‘Experts’

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We all know the value of advocacy – it is the work that brings about change.  In the world of multiple sclerosis there are advocates everywhere, connecting the community of people affected with this disease with the  leaders who shape policy,  run non-profit organizations dedicated to improving quality of life, improving delivery medical care, and those who develop medical products.  It’s not unusual to be asked as an advocate to share my thoughts on an issue and I am more than happy to do so; I’ve even been known to do this without having been asked. Part of the role of an advocate is to identify issues and speak up for change where needed. This scenario pretty much describes every chronic disease community –advocates  are the go to people when others want to better understand the needs.

MS Advocates are also often viewed as patient experts and  contacted by the pharmaceutical industry for input on product design, especially in reviewing the marketing material for the multiple sclerosis drugs they own the rights to.  Successful bloggers and community leaders make particularly good marketing experts, being in the position where we are actively engaged with others who also are affected by MS, and we might be able to provide user insight not available in other ways.

A fellow blogger recently emailed several of us who have done projects with various MS drug companies in the past, wondering why several of  these companies, that make billions of dollars selling their drugs to us, are not willing to pay consultant fees for our ideas and more importantly, our time.  It’s a great question and one I would like to pose publicly.

The usual scenario for a project with one of the drug companies will be after the initial contact, we are provided with background material to read so we can think in advance about the topic and product.  Then we travel, sometimes long distances and always the day before the larger gathering, to meet in person at an always nice hotel, with very good food and comfortable beds.   I will agree that no money is spared in the travel accomodations. We spend an entire day, starting early and concluding in the late afternoon, listening to their presentations and providing feedback.  Then we either travel home that evening or head back the next day.  This is not a vacation and rarely is there time available to see any sights or enjoy the local environment. I always pack my swimsuit with the illusion that I will actually use the hotel’s pool, but that has yet to happen.  We arrive, meet, and then go home pretty much exhausted and spend another few days recovering. An in-person meeting easily consumes three full days, which is a huge commitment of time.

We do get the chance to spend time in person with like-minded advocates, and that is how I have finally been able to meet and spend time with people who I have known via their advocacy work for a much longer period of time. This is one big perk for saying yes to attending one of these meetings, but it might also be the only perk.

Why would we do this without any other type of compensation, such as a consultant fee or honorarium?  It sure isn’t for the frequent flyer miles.  And they aren’t giving us a year’s supply of their drugs for free.  Doing work pro bono for non-profit organizations is not part of this discussion – we’re all more than happy to support their work in any way possible.  Again, I have to note that I want to advance the needs of the MS community and I give consistently and often excessively of my time and talents for free to non-profit organizations; the donation of my time is worth way  more to them than if I were to open my wallet and give my small amount of money. All of my fellow advocates do the same, if not more.

What I’m particularly interested in understanding better is why when I am attending  some of these meetings, every person in the room is being paid either as an employee of the host organization or a member of the firm that found us and organized the meeting EXCEPT for the MS advocates?

Focus groups that are convened for online or telephone discussions are routinely offered compensation either as a small honorarium which is usually in the form of an Amazon gift card in a token amount; it is a nice gesture to show that our knowledge and time have value and is appreciated.

The looming question is about the differences among the various companies regarding these in-person meetings, with some who do offer compensation for our time while others insist it is against the law to give us any monetary compensation. In my thinking, the companies who do not consider  our worth and fail to compensate us are minimizing the value of the patient advocate and continue to perpetuate a system that takes advantage of our trust and good will. 

Compensation from the pharmaceutical companies who ask for our time and knowledge should be a standard part of this process and not a capriciously applied interpretation of rules and regulations. Of course this is solely my thoughts and I would welcome an open discussion with other advocates and with pharmaceutical representatives.  Please share your thoughts here or in our Facebook group Multiple Sclerosis Bloggers and Writers;  perhaps we can  then come to an understanding of expectations.

 

Be well,

Laura

 

 

 

 

Big Boobs & MS Blog Awards

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award-badgenonHealthLine.com covers many chronic diseases and offers a contest each year in all of the disease categories for the top blogs.  I always wonder how these work so this year when the opportunity came up, I self-nominated my own blog. I thought just getting my name out there and having people vote for my blog would be sufficient, but I guess that isn’t the secret to cracking their elusive group.

Initially I was disappointed that my personal blog, InsideMyStory.com was not selected as one of HealthLine’s top MS blogs for 2016, even though they have a lengthy list of 23 announced in a recent email.  Healthline introduces their Top MS Blogs by writing

We’ve carefully selected these blogs because they are actively working to educate, inspire, and empower their readers with frequent updates and high-quality information. If you would like to tell us about a blog, nominate them by emailing us at  bestblogs@healthline.com!”

When I was perusing the list, I found many great bloggers on the top 23 list, including some written by friends and many that are hosted by advocacy organizations like NMSS and MSAA.  But then there were others I was not familiar with and wanted to learn more about these top bloggers.

After clicking on each of these unknown, I find there are a few on the list that are inactive blogging sites, having not had anything new posted on them for months or even this year.  Their #2 listed blog has had not activity since August 2015, yet they have been given this award for their frequent updates and high-quality information. This is a bit puzzling but maybe I’m missing something.

Most surprising and entertaining to me is to find one of their suggested sites having me do a double take – I backed up and reclicked their link to be sure I was on the right page.  Their description reads:

“OzMS Blog!

MS isn’t just about pain, and it isn’t just about fatigue or losing sensation. MS is many things. On the OzMS blog, you’ll find posts about medications, new studies, and helpful gadgets, along with instructional videos for medications and injections, and information on upcoming conferences and symposiums.”

 

This “top MS blog” has a lengthy essay on how with just 30  minutes of self massage a day I can make my breasts larger and then closes with this weblink – Visit http://londonxcity/escorts for attractive and beautiful woman.   I find no mention of MS at all in this essay on the value of big boobs.

 

Whatever the vetting process for selecting these blogs must include, I have to say I am feeling less disappointed that my writings didn’t make the list because obviously they weren’t read closely or perhaps not at all. To any of you who read this and may have also been on the nominated list, keep in mind none of us write about MS for a purple badge of honor to post on our sites.  It continues for me to be enough to remember that many of you read my blog, make your comments and share my thoughts with others.  But watch out, just maybe next year I might find a better topic, such as natural breast enhancement to increase my odds of gathering attention.

 

be well,

Laura

PS thanks to all of you who took the time to vote and to vote often for my entry!

Shingles belong on the roof, not my body!

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When  I woke Saturday morning in the king-sized bed at the Marriott, I just assumed the ache in my left side was from sitting or sleeping in the wrong position and it would go away.  It had been a busy few days at the Annual Consortium for MS Centers meeting and I recognized my body was feeling the strain of the long days. I hopped the plane and made it home, with no more pain from my side but later that evening, it again began to ache and I commented that it must be a muscle strain.

Sunday I woke still sore, but not too bad and certainly there was nothing that gave me a clue it might be something else.  It wasn’t until well after midnight and just before dawn I woke in such extreme pain I had my husband take me to the ER.

The kind ER staff took my vitals, gave me a hefty injection of morphine for the pain, wheeled me down the hall for a quick CT to look for kidney stones or other obstructions, and then came to the decision I had the shingles. There were three tiny red rash patches on my left side – that was all – and the ER doc was confident of her diagnosis.  I thanked them all for their prompt attention and kindness, their painkillers, and my prescriptions, and went home.  A few hours later the small rash had spread to larger areas and I had to agree with the doctor… I have the shingles.  AKA Herpes Zoster, a close cousin to the Chicken Pox virus varicella-zoster. The advertising theme of one manufacturers  at the conference had read ‘In MS, it starts with a flicker’ but I don’t think this is what they meant.

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On the drive home I sent a text to my neurologist inquiring about the connection between shingles and my MS drug, natalizumab (Tysabri). The prompt reply said even though my immune system may be somewhat compromised by this multiple sclerosis drug, it was more likely the hectic pace I had been keeping at the conference I was attending and the after effects of major foot surgery was what made me susceptible to this viral infection. The irony is I was at a conference about MS and how to better treat people affected by the disease, and at no time did I hear shingles mentioned; but during my time there I must have been in contact with someone with an active case of one of the Zosters – either chicken pox or herpes.

I’ve considered the shingles vaccine in the  past because I have reached that recommended age, but had not pursued it because live vaccines are not ordinarily recommended for people with multiple sclerosis. Had I known what this outbreak would be like and the pain involved,  I would have gambled on the MS having a relapse and taken the shot as soon as I was eligible.  The nurse tells me once my shingles have cleared I should consider getting the vaccine and I replied there was nothing to think over – I will take that shot if it means avoiding future episodes of the shingles.

 

In the meantime, all I can do is wait this out. I was put on an anti-viral medication thanks to the intuitive ER doctor, and that may have cut the duration of this outbreak, but I still can’t stand to have things touch my body.  Consequently, I have spent the week in a loose-fitting nightgown and tried to move as little as necessary. I’ve cancelled all plans, including another trip next week and am happy to sit still and do nothing. I understand it will be too hot to go out this weekend anyway so I might try to make the most of this and sleep and write my way through the days ahead.

If you are eligible for the shingles vaccine and have not yet had it, do yourself the favor and get it!  The temporary discomfort to your body for the injection and your wallet for the cost can’t compare to the pain and inconvenience of an active case of the shingles.

 

 

 

 

 

Cost Effectiveness in MS Treatments

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I’ve thought a lot about my treatment costs in the past few years and even have raised the question at OhioHealth, where I am treated with Tysabri, made by Biogen.  When I first went to this new location in January 2015 the cost was around $14,000 per month. This new medical provider (I followed my neurologist there when he decided to go to a different medical practice) constructed a new building and the infusion clinic was moved there. Initially I was shocked, but then angered to see the cost of my treatment, which was costly enough at $14K per month in their old building  had jumped to $22,585 per infusion in the new one, meaning my treatment cost would be billed at over $250,000 for the year.

When I checked my medical records for this story, I find my medical provider is now charging $24,908 per treatment, which is more than a 10% increase from January 2015 to April 2016.  Part of this is an increase in the drug’s cost and the remainder is their infusion clinic overhead.

 

When I question this, the explanation given is fairly predictable and had to do with negotiated payments and how my insurance was not going to pay that much and it would be a significantly reduced amount that was eventually paid.   For the increased bill of $24,908 the clinic provider is ‘only’ paid $12,578.    $160,000 per year is the real cost for my treatments based on today’s pricing, which is still a staggering amount to consider.

 

I continue to have my own mental struggle as to whether this amount of money is worth it in the big picture, considering my age and other factors.  Is it fair for my treatment costs to affect the health care dollar costs like this and take a sizeable chunk out of the available monies? How much does my treatment affect the escalating costs of health insurance? MS is a chronic disease that as of now has no known cure and I could conceivably continue on this treatment for the remainder of my life, amassing treatment costs in the millions of dollars.

 

Fortunately for me the entire cost of treatment is covered by my private health care insurance along with the patient assistance program for Tysabri costs.  I have paid nothing out of pocket all these years but I imagine these types of bills are part of what is driving up the cost of health insurance, for which I do pay a lot and so does everyone else.

 

Just when I think I am over being angry or frustrated by my MS treatment cost there is often another reminder of this escalating bill, usually in the form of a notice from my insurance telling me how much they had been billed and  actually paid.  Today’s reminder came in a different way – through the writings of Dr. Gavin Giavanonni, and Bart’s MS Blog, written by MS doctors and researchers  with   the departments of Neuroimmunology, Blizard Institute, Barts and The London School of Medicine and Dentistry, in the United Kingdom.

 

In this particular article they talk about NICE, the National Institute for Health and Care Excellence in the UK. One of the functions of NICE is to set pricing for healthcare treatment, including drug costs.  NICE decides on what they consider a fair price to pay for a drug and then looks at other options for treating the patient and then decides which would be most cost effective for their government health care system. The blog authors are also concerned about affordability and accessibility of drugs and how the policies of NICE affect treatment and posted this observation from a recent conference

“Another ground-shifting poster was the ORATORIO study results (ocrelizumab in PPMS). This study is the first study to show a DMT slowing the rate of disability progression in PPMS. This has to be one of the most significant things to happen in the field of MS in the last 10 years. Despite this I am concerned that NICE may not view ocrelizumab as a treatment for PPMS very favourably. NICE always assesses cost-effectiveness using an incremental cost model. For PPMS the cost-effectiveness of ocrelizumab will be compared to what is out there already, i.e. best supportive care.”

 

Their writing had me thinking again about my own treatment cost and now I also wonder if I could put a price on what it might cost to provide  me with supportive care compared to the money being spent on my drugs.  For now I would not need much in the way of help and all of the money could be spent on someone else.  But that picture could change very quickly if my MS progresses because I was not on treatment and I found myself dependent on health care services for my activities of daily living.  Would that amount of money take care of me if I were in a nursing facility? In 2013 the average daily cost of nursing home care was $248/day or about $90,000.  Just think of the money that would be saved if somewhere someone decided the cost effectiveness of my Tysabri showed that health care money would be better spent by putting me in a nursing home?

 

Reading this question in the Bart’s MS Blog makes me concerned for all of us because the cost effectiveness model might be what’s needed to control our drug costs here in the US.  In some ways our insurance companies are already doing a form of this by often denying treatment or authorizing only certain drugs for reimbursement but not all of them.

 

The topic of cost effectiveness is one of the core points listed in the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) project, a major initiative for the US and parts of Canada looking to link patient clinical data together.

“Health Care Economics Core

Will identify information to be collected in the database regarding disability, utilization of health care resources, and employment to help better understand whether the use of expensive therapies has been worthwhile from an economic standpoint, what are the savings from fewer hospitalizations, less disability and longer employment spans, and decreased utility of other health care resources”

Unlike the system in the UK which helps with the other costs of living such as housing, transportation  and medical care for people who are  in need due to the financial demands of living with a chronic illness, we don’t have that broad ranging assistance here in the US.  My health insurance would not pay any of these living costs – but they will pay for my drugs.

 

Being financially responsible leaves me little choice –  I will continue on these treatments despite the escalating costs and my lingering questions  and do my best to avoid future care needs that I would have to pay from our own resources.  In the meantime I just hope the next bill I open doesn’t cause me to require treatment from choking on the price.

 

be well,

Laura

 

Mary Jane and the MS Clinic

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Dear MS Neurologist,

I know you’ve already been to school and learned about all the things related to treating my MS.  You also spend lots of time – hours and even days – learning about the latest and greatest advances in medicine and ways to treat the symptoms of MS.  But I read in the headlines that medical marijuana is coming to our state soon, and this is one more thing you will need to learn to add to your  armamentarium (medical bag of tricks).  You will need to better understand the different pharmacological benefits of various marijuana strains so I want to point you to this site that will better instruct you on the sixteen strains recommended for MS.

This is a web-based  resource to give you the straight dope because you won’t get this in any medical text book or through Continuing Education courses to earn CEUs. As a pre-study course you may want to consult a horticultural guide to better understand the differences between sativas, hybrids and indicas.

 

My first important point in the lesson is you should not be influenced by the names. As mom always told us, don’t judge a book by its cover.  Marijuana names are not as smart sounding as Aubagio, Rebif, Tecfidera, and all the other already established drugs except perhaps for Glatopa which could easily cross over to the medical marijuana name list. For example, Yabba Gabba Goo, has a playful name, but it is listed as effective for both MS and Crohn’s disease and depression and muscle spasms; its benefits are euphoria, relaxation and energy.  Sour Mango says it tastes a bit like a sour patch kid crossed with mango and will help with energy as well but it doesn’t list benefits of treating muscle spasms. I’m sure this sugary tasting high is different than the one you get when actually consuming sour patch kids.

 

One thing different about these names than the usual MS drugs is all of them will be words you already know and won’t have trouble pronouncing, such as Double Diesel, Super Jack and Medicine Man (promoted as a medicinal delight).

 

This resource will also help you to better understand your patients when they come to you with a request such as ‘I want to talk to you about Flo,’ which has nothing to do with urinary streams or moving with the crowd.  Instead, Flo is recommend for muscle spasms and anxiety, but should only be prescribed for nighttime use since its effects are relaxation and sleepiness.

 

There’s so much to learn about these new treatments and no one is expected to know it all, so remember there are tutorials available online and most come with photos and can be used as a refresher course.  This could be useful when patients arrive in your examining room and pull out a fresh bud, and want to know if it will help a particular symptoms but they are unable to tell you what it is. After all, you are expected to be the expert of everything, and able to help weed out the things that don’t work well. Here’s a sample of the pictorial guide as a referencefrom www.marijuana.com, these four strains are recommended for muscle spasms.

muscle spasms

 

There won’t be an exam after you study this information; we know memory is affected by consuming marijuana and we’re unsure of the contact high you might encounter through these photos and your patients.   You also won’t need to worry yourself about an aptitude test on filling a bowl, rolling a J, or sifting seeds, as those skills fall to other sources.  But it would be nice if you could keep some brownie recipes handy when your patients ask for alternative consumption methods.

 

Until medical books and training catch up with contemporary practices, I hope you will find this guide useful.

 

Your best bud,

Laura