Lemtrada and the Patient’s Voice with Dr. LaGanke

Dr. LaGanke photoImagine being only a two year old toddler and having your mom diagnosed with an invisible illness. As you grow up, you watch your mom fall down over and over while you’re not strong enough to help her back up. Imagine feeling her embarrassment as she had yet another accident. Worst of all no one would talk about it because in that day and age, these things weren’t discussed.

Would that light a fire in you? If you had a third grade art project about how you would change the world, would you paint a test tube containing the cure for MS? Would that determination stay with you through your teenage years and illuminate the path to your college studies?

This is the story of Dr. Christopher LaGanke.  From that little boy, he followed his passion to a neurology residency at University of Alabama Birmingham under Dr. Whitaker then on to open his own practice dedicated to solving the puzzle of invisible illnesses, like the MS that plagued his mother.

Throughout all the years of his practice, he has never forgotten the patient’s voice that drove him. This is very evident from a national level as he, followed by his patients, advocated for the FDA approval of Lemtrada. I am honored today to sit down with Dr. LaGanke and talk about Lemtrada’s approval.

Matt: Dr. LaGanke thank you for taking the time to meet with me to discuss the new treatment option for people living with MS, Lemtrada. What inspired you to take part in the Lemtrada trials?

Dr. LaGanke: When I watched my mother going through her struggles, I knew that I wanted to make a difference in the lives of people living with MS. I grew up in a time when you didn’t talk about your feelings; you dealt with it on your own.

As I grew older and wiser, I wanted to help speak for people who didn’t have a voice. I feel that part of that voice that I have is to evaluate new options as they evolve. What I saw with the results from the Lemtrada trial left me really impressed.

I saw two real benefits for MS patients; one was superior efficacy and the other was the infrequency of treatment. A person may only need the opportunity to take Lemtrada twice, instead of having their MS treatment be a frequent disruption in their life.

I was very eager to participate in the clinical trials and was very pleased with the outcomes. The most surprising thing to me was the patient satisfaction with Lemtrada. Not only their immediate satisfaction, but how they have continued being satisfied years after finishing their course of Lemtrada.

Matt: What did it mean to you to become the first physician to initiate treatment of Lemtrada for people living with MS?

It was very humbling and gratifying to be the first center in the US to administer Lemtrada commercially. Gratifying because of how hard so many worked to try to reverse the FDA decision. When the initial rejection occurred a year ago, I wrote a letter to all of my patients asking them to write a letter to congress to reconsider. I was very passionate about getting the patient’s voice heard.

The response was overwhelming. My patients would come in and bring the letters back from congressmen and women. Everyone was excited to rally around the cause of getting Lemtrada approved, so that patients could have another treatment option for their unmet needs.  One person who comes to mind, Stuart Schlossman, of Stu’s News and Views, ran a very large petition and helped tremendously. It was amazing to have all these patients’ voices pull together with a unified message that congress heard.

Matt: In layman’s terms, could you explain to my readers what exactly Lemtrada is and how it works?

Lemtrada is a natural treatment of sorts, being a one clone antibody.  This monoclonal antibody is directed against a marker on certain T and B cells to destroy those cells. The other cells forming the front line of the immune system remain intact as Lemtrada targets the T and B cells reducing their entrance into the central nervous system where they can cause MS lesions.

The bone marrow then will reboot and reproduce T and B cells that were lost. Lemtrada is administered twice, or once a year over two years. After the second rebooting, the hope is the second generation of post Lemtrada T and B cells are devoid of the potential to cause MS lesions.

In 70% of the population, MS has not re-emerged in five years. I do want to make the distinction between cure and fix. Cure means that you have a taken a treatment and do not have to worry about the disease reoccurring. A fix is something that would repair or remyelinate in MS. Cure does not mean that function comes back.

For example, a mastectomy will remove the breast cancer, but the removed breast tissue will not come back. There are more steps that need to be done to reconstruct what was lost. Lemtrada is the only medication whereby the patient is neurologically better 2 years after he/she started the treatment. We’ll take improvement but we are not fixing everything. There are agents in the pipe line currently that may work on the fix. We are not there yet.

Matt: What is the delivery method of Lemtrada?

Lemtrada is administered through an IV for 4-5 hours for 5 days consecutively. Then it is repeated for 3 days a year later. The hope is that two treatments is all that it will take. The patients didn’t see a high rate of infection. There is a monitoring system to follow for potential side effects. Blood and urine analyzed every month for five years. This is protocol driven for patient safety.

Matt: In your words, who is a good candidate for Lemtrada?

Lemtrada is indicated for someone who has tried two treatments prior and broken through clinically or had intolerable side effects. Candidates may be Tysabri patients that are JCV+ or breaking through on other frontline medicines. This harkens a deeper question of the patient’s voice.

In other countries patients and doctors are allowed to choose any approved medication at any point of their relapsing MS. Ideally, as long as the patient understands the risk and benefit of the treatment a patient should be able to choose from any of the FDA approved treatments, but that is not our paradigm.

Matt: Dr. LaGanke thank you so much for joining me. Do you have any closing thoughts?

Thank you for hosting me.  The average patient who is diagnosed has his/her world going in one direction and is then thrown off the apple cart with this diagnosis. The courage of seeing my mother go through this condition helps inspire me to get through every day with a smile. Knowing that I have a voice and can make a difference in the patient experience is very meaningful to me.

Matt: With doctors helping the fight against MS, like Dr. LaGanke, and all the other people who rally around the patient experience, maybe one day, we can all live in that world that he dreamt about in third grade. A world free of MS.

Always consult your physician before considering any treatment change.

For more information about Lemtrada, please visit: https://www.lemtrada.com/

 

 

 

 

 

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4 Comments

    • Matt Cavallo

      Thank you Meagan! I am glad that you enjoyed the interview. Dr. LaGanke was an inspiration to speak with. I was moved by how fought to make sure that the voice of the patient was heard.

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