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?

 

 

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.

Exhibit promo

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.