At The Crossroads Of Retirement And Rare Disease

Aug 22, 2018 | Patient Blog

“This medicine helps Jan so much with her speech and swallowing; I don’t know what she would do without it!” states Chuck, whose wife, Janet, was diagnosed with Amyotrophic Lateral Sclerosis in 2011 at the age of 60.

Approaching retirement, this wasn’t in the game plan for how they wanted to spend the years ahead. With both kids now having graduated college and on their own, this was now time for Chuck and Janet to save more money for all that they had looked ahead to do once they retired.

But rare disease, or any disease, is never in the game plan. What does one do when hit with such tragic news?

What did you do? How did you respond?

Yet for many, the journey began long before diagnosis. Often times, it is the process of getting to a diagnosis that can wear the patient and family down the most as you go from one doctor to another, all in hopes of something, anything.

For Janet, it began with a stiffness in her left leg that led to scheduling an appointment with her primary care doctor who then referred her to a neurologist.

After undergoing many exams and tests, the doctor still could not figure out what was wrong with her. He finally referred her to yet another doctor, but this time, at Stanford Hospital who was then able to finally make a diagnosis.

Still, the disease progressed to the point that Jan had to quit her work and went on disability two years after the diagnosis was made.

But what is Amyotrophic Lateral Sclerosis and is there a cure?

What Is Amyotrophic Lateral Sclerosis?

Janet’s disease is a progressive degenerative upper motor neuron disease. Being progressive, ALS symptoms grow worse over time.

According to the National Institute of Neurological Disorders and Stroke, Amyotrophic Lateral Sclerosis is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.

What Are Motor Neurons?

Motor neurons are nerve cells that extend from the brain to the spinal cord and to muscles throughout the body. These motor neurons initiate and provide vital communication links between the brain and the voluntary muscles.

What Are the Symptoms Of ALS?

As with Janet, the onset of ALS was subtle. This can lead to overlooking the symptoms initially. But over time, and as it gradually progresses, the weaknesses become more obvious to detect.

Symptoms can include:

  • Muscle twitches in the arm, leg, shoulder, or tongue
  • Muscle cramps
  • Difficulty chewing or swallowing
  • Tight and stiff muscles
  • Muscle weakness affecting an arm, a leg, neck or diaphragm.
  • Slurred and nasal speech

If you or a loved one is experiencing any of these symptoms, please consult your doctor.

Early Retirement Means Change of Plans

Just three years after diagnosis, Chuck learned that he would be having to retire earlier than planned. In his own words,

“In 2014, I was advised that the company I worked for was closing the factory where I worked and I was going to be laid off in September 2014. I was 65 years old and it was sooner than I expected to retire.

Both of these events combined, reduced our ability to save more money for retirement. This was going to be our time for us to save more money as our two children were through with collage and on their own. As it was, it was close enough to retirement that we decided to sell our house in the San Francisco Bay Area and move to a quieter and less expensive area in the Sierra Mountains. I was now on Medicare and eligible for full Social Security in October 2015.”

By then, Janet’s disease had progressed to her right leg, forcing her to use a wheelchair, as well as to her arms and hands. Last year, the disease progressed to affect her breathing, speech and swallowing.

It was then that her doctor prescribed a medication generally used for patients with PsuedoBulbar Affect. It has greatly helped Janet with her speech and swallowing.

Affording Medication With Low Income

But, as we have heard time and time again, finding something, anything, that helps the patient can quickly be met with: but how are we going to afford this?

Chuck tells us about the moment he and Janet learned the cost of this medication, which was actually helping,

“When we received the first prescription and tried to fill it, we were told the cost was $329 for a one month supply. I asked the pharmacy what was the copay amount, and they said, that was the copay amount! We were shocked by cost and I told them we could not afford that kind of monthly expense!

I called the drug manufacturer and asked if they had any programs to help low income people afford their medication and they said no. But, they did refer me to Patient Services Inc.”

Chuck then contacted Patient Services Inc., and filled out the application. Having met all the criteria, Chuck and Janet were now approved to received support from PSI.

Not long after, the copay for that same drug had actually increased to $600 for one month. At PSI, we are honored to be able to walk alongside Chuck and Janet and are just so thankful that this medication is helping.

But with so much good coming from health care charities like PSI, why are these organizations under threat by the government?

DYK That Health Care Charities (Like PSI) Are Under Threat?

Recently, a federal policy was issued by the Centers for Medicare & Medicaid Services (CMS) is prohibiting charities from helping Americans pay their health insurance costs, keeping essential treatments and services out of reach for many of those most in-need.

You can learn more about it as well as what you can do by visiting our #LetCharitiesBeCharitable action page on our website here.

Join Chuck And Janet In Letting Charities Be Charitable

“Thank God for Patient Services Incorporated! This medicine helps Jan so much. We certainly could not afford it without PSI’s help!”

Thank you, Chuck and Janet, we are all in this together.

Read more PSI News

Give Back on Giving Tuesday 2020

Give Back on Giving Tuesday 2020

Patient Services Inc., the nation’s first patient assistance charity, is participating in Giving Tuesday 2020 this holiday season, a global day of generosity that brings people across the world...

Sign up for our emails!

Join our email list today for an exclusive welcome video from our CEO and brand new content from PSI.  

Thank you for subscribing! We are so glad to have you.