Pleasanton MS patient speaks out on FDA decision





Kelly Crady-Desjardin

Kelly Crady-Desjardin

Imagine having a chronic illness which affects you drastically. Your condition causes vision and walking issues, leaving you unable to work Now imagine that a drug exists which has been shown in studies to help your symptoms greatly. Yet, you must continue suffering because the FDA has yet to grant approval.

This is the situation that Pleasanton resident Kelly Crady-Desjardin is in .

Sixteen years ago, the San Antonio native was diagnosed with multiple sclerosis, commonly called MS. The National Multiple Sclerosis Society describes it as an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body.

At the time, she worked full-time as a service director with H-E-B.

“I was working a lot of hours and I thought it was just stress,” she said.

Her job kept her on the go and she was a new, first-time mom. She noticed her balance was off, she was clumsy and others often thought she had been drinking. Numbness in her feet was another problem she began having.

She decided it was time to see her family doctor.

“He just did a simple skin test and I didn’t realize that up to here I was numb,” she said while pointing right below the knee, “He was drawing blood and I didn’t even feel it.”

She was sent immediately to a neurologist. Looking back, she is so thankful that her doctor did not simply dismiss her symptoms. Many times medical professionals chalk it up to stress, especially when the patient is so young.

“I was only 22 at the time. Most doctors would have just said, well you are a new mom. They would have come up with all kinds of excuses.”

The first neurologist she saw diagnosed her with neuropathy, or nerve damage and prescribed her pills. When she returned to her family doctor he was especially concerned. Crady-Desjardin said he must have had a strong feeling that there was more to her pain.

He told her to see Dr. Ann Bass, who was new to San Antonio. During the time that H-E-B was trying to push Dr. Bass onto her insurance plan, she saw another neurologist who performed an MRI. A year later she started seeing Dr. Bass.

“She has just been awesome. She has really stayed on top of the latest and most updated medications that are out there. She has kept me well and going for all these years.”

Right away, she began daily injections which seemed to help. She stayed on it for two years. Crady- Desjardin’s experience has generally been that her treatments and medications work for about two years. However, after that her body seems to become immune to the treatment.

She has been through all of the FDA-approved medications. Desjardin hit a rough patch and quit her job of 10 years, to go through two years of chemotherapy.

“That is when I started having a lot of the problems that I’m having now. I was starting to lose my vision. I was having problems walking again unassisted, those kinds of things. Those two years of chemo really helped and kind of put things back on track.”

After that, she was able to take another FDA-ap- proved drug.

“MS is just one of those things where you kind of go with the flow.”

Then Crady-Desjardin began talking about Lemtrada, the drug which Dr. Bass started trial studies on in 2002. Earlier this spring, the FDA decided not to approve Lemtrada, despite the fact that it is approved in other parts of the world. Just recently, it was approved in two more countries.

Dr. Bass explained that in early April there was a recent development– the application was resubmitted to the FDA.

“We are hoping they will reverse the decision,” said Dr. Bass, who is with Neurology Center of San Antonio. “Kelly is a great candidate for this treatment. She has tried everything.”

Crady-Desjardin has been seeing Dr. Bass for 15 years. She was not eligible for the Lemtrada trials because the studies require that a participant has not had any chemo drug.

With MS she said, once you start to lose those key functions like your vision, they are gone.

“That’s why there is such a push for the FDA to hurry up and approve this drug. My vision… I may or may not get it back.

You can hear the frustration in her voice as she describes how she is scared.

“I cannot see anymore. I can barely see my phone now or see my kids and help them with their homework.”

She is especially grateful to Leslie Dowdy for the online Meal Train program, in which others sign up. Every three days someone brings a meal to Kelly’s house.

“The community support I have gotten has just been tremendous.”

She, husband Richard and family live close to the school and do not have bus service. They have four children that range from 7 to 17. They were once foster parents and subsequently adopted two children, Timothy and Juliette. Tyler is from her previous marriage. The couple had Tanner before adopting Juliette.

Lois Ferguson, a friend, contacted the school and after hearing about their situation, they arranged to bus son Tanner at the elementary and daughter Juliette at the Primary. They then are bussed to PIC so they can walk home together.

“The way that the school district worked it out for me… the sense of community is awesome. When they started the Meal Train program that all happened in like 12 hours.”

Her feeling on traveling to another country for treatment is this, “I’m from the United States and this is where I should be able to be treated with this drug, with my doctor. You cannot really say it is a cure for MS because they have only been doing trial studies since 2002. Who is to say you cannot still have a relapse but up until now no one has so in my book, it is a cure. Why would the FDA or anyone withhold a drug like that from anyone? If it was their family member suffering they wouldn’t do it.”

For about the last five weeks she has been going through an especially difficult time. It has affected her emotionally, as she used to be involved in so many volunteer activities and her children’s school functions.

She feels guilty for having MS and not being the person she feels she used to be.

“You should see my kids. They are wonderful. They hold my hand to walk me to my room because they know I am unstable. They have seen me fall. They have had to pick me up and I hate that. Every day, walking home Tanner picks a flower for me.”

They always knew she had MS but never really had to comprehend it until recently.

She beams with pride as she talks about her family, especially her supportive husband. Although she acknowledges her disease is hard on him as well.

“He takes care of me and I really couldn’t ask for me, but he misses the old me.”

A couple of weeks ago the family visited Sea World, the first time Crady-Desjardin had been outside of the house in two weeks. Mr. Desjardin held her hand as she cruised around in her chair.

She also fears passing it on to her children, as autoimmune diseases are often found to run in families.

She again expressed her frustration at not understanding why the FDA will not approve Lemtrada. She believes that like many situations, it is about money. Take the thousands and thousands of MS patients and multiply it by $10,000 a month, which is the average cost of drugs. If all these patients were on Lemtrada, it would only require a handful of injections during the first year. This tapers off the two years after that and then the patient is done.

“What money are they going to collect? To me that is what this is about and it is sad to say that.”

Then Desjardin talked about one of Dr. Bass’ patients who received Lemtrada through the trial study. She saw a story on this woman by KSAT-12 TV reporter Ursula Pari.

“She was 55-years-old and square-dancing. She got the drug and I didn’t. That is the difference.”

Crady-Desjardin has had to return to another drug she was on before. One of its side effects is a deadly brain infection. Yet, this specific drug has been approved for MS, while Lemtrada has not.

She is also extremely sensitive to the sun and heat. During the summer, she said she keeps the house like a bat cave.

“It just drains every ounce of energy.”

Dr. Bass hopes that other MS patients and their families will join in their effort. She added MS is often controllable, with a favorable outlook and prognosis.

There is an online petiton to urge the FDA to approve Lemtrada. You can still sign it, although it has been presented to the FDA already. Here is the link: petitions.moveon.org/sign/thousands-ofmultiple

There are currently 10 FDA approved MS therapies. Hopefully soon, Lemtrada will be added to that list.

Said Dr. Bass, “It is a win every time a new treatment is approved.”


The family during spring break of last year, March 2013: Richard and Kelly Crady-Desjardin with children Tyler, Tanner, Juliette and Timothy. They visited Cozumel, Jamaica and the Cayman Islands.

The family during spring break of last year, March 2013: Richard and Kelly Crady-Desjardin with children Tyler, Tanner, Juliette and Timothy. They visited Cozumel, Jamaica and the Cayman Islands.

 

 

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