My Opportunity to Speak with ‘Big Pharma’
I was in Boston last week at the headquarters of Sanofi Genzyme. Yes, the big drug company. They brought together several people they consider to be “digital influencers” to pick their brains about what’s on the minds of people like you, who read what we write.
Sanofi Genzyme paid me for my time and for the knowledge that I contributed to their Lemtrada Multiple Sclerosis Digital Advisory Board meeting. They also paid for my travel and reimbursed my expenses. I’m going to tell you about this meeting, but first, the lawyers also want to be sure that you understand that all of the thoughts that I’m about to “express” are my own and don’t represent the views or opinions of Sanofi Genzyme. I wouldn’t have it any other way.
I agreed to participate in this meeting because every day I read comments from other MS patients about how they feel about their DMDs, or their potential DMDs, and the concerns that they have about them. They’re hopeful, scared, excited, worried, positive, negative … there are a plethora of emotions. This, I thought, would be an opportunity to pass along your comments to one “Big Pharma” company. It was an opportunity that I couldn’t pass up.
You may question my acceptance of a small amount of money to attend this meeting, and that’s a valid concern. I’m a freelance writer. If I spend a day doing something, that means I may have to give up doing something else that brings in some cash. I assure you, I haven’t been bought and my objectivity remains solid. But, you as my readers will always be the final judge of that.
I was one of seven “influencers” who met with about an equal number of people who are involved with Sanofi Genzyme’s marketing, PR, and social media efforts. We met for seven hours.
Here are some key points that we “influencers” made:
- MS patients complain about receiving inconsistent information about MS drugs. Patients may hear one thing from their neurologist but another from fellow MS patients they meet online. Or their neurologists may have no answer to some of their DMD questions. Or perhaps their neurologists won’t take the time to explain things or to answer their questions.
- Some neurologists dictate a specific DMD, giving their patient no choice. This can foster the impression that the doctor may be in the pocket of a particular drug company.
- Infusion protocols can be inconsistent, as can be the level of knowledge about certain drugs in some infusion centers.
- Patients are worried about side effects, particularly when it comes to the latest group of disease modifying drugs given by infusion, such as Tysabri, Ocrevus and Lemtrada.
- Out-of-pocket costs are a significant worry. Making a choice between paying for a drug and putting food on the table is a real concern for some.
- It can be difficult to find information about financial help.
So, a lot of the discussion revolved around what Sanofi Genzyme might be able to do to address these concerns. And how it can add to, and improve, its social media tools to accomplish this.
I believe the company is serious about these efforts. And other influencers, some of whom have been involved with similar sessions at other drug companies, seemed to leave this session impressed by what they heard.
I’ll be very interested to see what actions follow that day’s worth of words. I’m sure that you will be, as well.
You’re invited to follow my personal blog at www.themswire.com.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Cheryl Carvalho-Case
It would have been nice if you had asked them why they don't contribute to promising MS studies involving T cell modification, or stem cell therapy; but most already know that corporate greed is the answer. Yes we know that some medicines do help many people and cost astronomical amounts to develop, but the question still remains Why not give something back in the area of non pharmaceutical research for MS? I nearly lost my precious daughter to the "mildest" drug Copaxone, and a close friend to another toxic cocktail and their neurologistsite can only offer hope to them by prescribing more of the same but with more serious side effects? These large pharmaceutical companies will make billions of dollars over the course of their lifetimes. When is enough enough?
Ed Tobias
Hi Cheryl,
Thanks for your thoughts and I'm so sorry about your loss. Several of us in the session did comment that there is a definite dislike of pharmaceutical companies by people who we meet on-line. I can also tell you that the Sanofi Genzyme web site says that the company financially supports research in several areas. I don't know the details but I would hope that some of it goes to non-pharmaceutical research. https://www.sanofigenzyme.com/en/Responsibility/Contributions-and-Giving.aspx
Ed
CHRISTOPHER PARIS
Although grateful for your very informative newsletter and its availability to me, gratus, I regret to state that your report on your attendance, agendae, and its content sounds a bit too ingratiating for my taste. Of course, all of us as victims of this disease are always profoundly grateful for the pharmaceutical companies'efforts; and, we all forever pray for the magic bullet some day. But, that's not the issue. The life-changing issue in spite of our unremitting courage is the cost. The cost is obscene and profane. Retired and on a fixed income, I'm only able to subsist and survive because I was blessed by a non-profit that adopted me and covers the balance of my co-pay. But, at the end of each fscal year, I suffer profound anxiety not knowing if I will be blessed with being re-enrolled. Let's get real about the fundamental issue: we are victimized, our lives are financially oppressed, the pharmaceutical and insurance companies engage in conduct equal to extortion, and we are thus marginalized and our human dignity is eroded. If it were not for that non-profit's profound compassionate, empathic, and humanitarian adoption, my estate would have been consummately depleted four years ago, I would be presently institutionalized in some obscure poor house tortuously awaiting the end among advancing disabilities to the final stop, or already dead. Our marginalization forever hangs over us or actively devours us in spite of our remarkable blue-honed steel courage in the face of life-threatening adversities your newsletter thankfully exhibits in each reading. I thank God, as all of us, for what we do have each day; Yet, I'm forever fuming with infuriating disdain for the oppressors I sustain in check, a deep deep heartbreaking wound I sustain in check among all of you foisted upon our human rights and human dignity. Life, Liberty, the Pursuit of Happiness: it's a heuristic; for without the guarantee of Life, there is no opportunity for Liberty; and, without Liberty, there's no opportunity for Pursuit of Happiness. Under this profound oppression, how do our land-of-the-free equality, even our disability rights and threatened human dignity fit?
Ann
Thanks Ed for your honest reporting!
I agree with Cheryl!
MORE NEEDS TO BE DONE
When patients revolt from these poisonous medications maybe than they will get the message!
charles
the real problem is that there is a huge profit motive for pharmaceutical companies to develop lifelong therapies, but little profit motive to develop a cure. that needs to change. pharmaceutical companies have the resources to develop cures for chronic diseases, but lack the motivation to do so. there needs to be a robust set of incentives in place to ensure that pharmaceutical companies have the motivation to develop real cures for chronic diseases.
Heracles
Did you ask how much Big Pharma has contributed to ensuring that stem-cell therapies are not approved by the FDA? Why are MS patients not given the choice of supposedly "risky" stem-cell therapies that have gotten numerous people out of their wheelchairs or ineffective toxic DMDs that cause PML, cancer, organ failure, skin necrosis, death, and bankruptcy...