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Finding Freedom

Living Forgiven and Free

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April 2017

I’m Not Afraid of Tears

I know it hurts. You don’t have to hide your tears.

ALS is a cruel and difficult disease. You see the visible toll and I know it makes you sad. Uncomfortable even.

I struggle too with each loss of function, especially with the big things like driving and eating. Let’s face it, it’s embarrassing when I eat like a toddler. I know it’s uncomfortable to watch when my hand is shaking and all the food falls back on the plate before the fork hits my mouth. I’ll get to a point where I’m ok with you feeding me. I know you won’t mind a bit.

I know it’s frustrating when you want to invite me places, but I can’t get into your house easily or I can’t get into the venue at all. So the invites stop coming. It hurts.

Your once vibrant, active, and strong friend is slowly wilting away. I get it. It’s ok to be mad. ALS is hard on everyone who crosses its path. It’s ok to be sad. It’s ok to cry in front of me. I’ll probably join you. It helps me know you care deeply.

I mourn not only the loss of physical function. I mourn the loss of cute shoes, my independence, and dreams of an active retirement. It hurts.

I’m an awkward physical mess and sometimes an emotional mess. Sadness catches in my throat and rolls down my cheeks without warning. Let’s express and validate our sadness when needed. But let’s not stay there.

I’m still me on the inside. I want to hear all about your life and encourage you to be the amazing person I know you to be. I want to laugh with you until it hurts.

So, I wear ugly shoes, depend on others, and change retirement plans. I can live with that.  

I love you my friend, and I am loved. That’s really all that matters.

I’m forgiven and Free and it’s ok if you cry with me.

 

Right to Try: A Call to Arms

People I respect have told me Right to Try is feel-good, unnecessary, and toothless legislation. What I hear is them telling me no, again.

Right to Try is a call to arms for ALS patients to demand access to potentially life-saving treatments that exist today.  There are possible treatments sitting in the pipeline with years to go before they receive FDA approval.  Tens of thousands of people have died waiting for an effective treatment. Most of us living with ALS today will die before these drugs get to market.

That is not OK with me or my friends and family who love me.

Even before Right to Try legislation (which removes the FDA paperwork requirement) passed in 33 states, qualifying patients and doctors could petition the FDA to get access to treatments in the pipeline under the Compassionate Use or Expanded Access Program. The lengthy paperwork processed has been trimmed and the FDA approves most of the requests. So what’s the problem?

Drug companies are in the business of making money by selling drugs, and they can’t sell a drug until it gets FDA approval. It takes 7-10 years and 2.5 billion dollars to get a drug approved. There are no incentives for drug companies to provide unapproved drugs to patients under Expanded Access or Right to Try. They only face risk, liability, and perceived interference with clinical trials.

So there you go. Thousands of people die because the drug companies can’t tolerate any more risk or liability.  Can the FDA alleviate the risk and liability? Yes. Will they? Not yet.

I say not yet, because I believe it can happen. 

I was interviewed for a recent Sacramento Bee Article.  The reporter did a fair job presenting all sides of the argument. My favorite quote is, “There’s a lot in the pipeline; we have nothing that works, and we’re dying quickly,” Hoover said. “I’m extremely persistent, and I will keep asking until I get a yes. My alternative is to do nothing and die. It’s worth a fight for me to do it.”

I have a real problem with the quotes from Don Nielsen, director of government relations for the California Nurses Association. He said he’s concerned that patients will become “guinea pigs for the pharmaceutical industry.”  I’m already a guinea pig for the pharmaceutical industry. So that’s not an issue.

He went on to say, “The reason no one in the process wants the liability is because (the drugs) haven’t yet been tested.”  Wrong. A drug has to pass Phase 1 safety and tolerability  trials before being eligible for Expanded Access or Right to Try.

Neilson continued, “It’s potentially a very unsafe situation for a patient. They’re being exploited by drug companies that could make a lot of money off the individual and not be held accountable.” I would love to have a sit down with Mr. Nielsen and explain to him that I have already taken a greater risk by participating in the Phase 1 trial — it was the first time the drug was tried in humans.  Also, drug companies can’t charge a patient more than it costs to manufacture. How much I spend on a drug and the risk I am willing to tolerate is not his concern. Here’s your nose back Mr. Nielsen, I found it in my business.

The ALS community is perfectly positioned to put Right to Try to the test and persist until we get a yes. The patient criteria is like an ALS biography:

  • Terminal diagnosis
  • Exhausted all available treatments
  • Ineligible for ongoing phase 2 and 3 efficacy trials

Check, check, and check. ALS is 100% fatal. We have no treatment, and we are not eligible to participate in phase 2 or 3 clinical trials 24-36 months after symptom onset.

We need to come together and demand access to potentially life-saving treatments. The time is now.

Tricket me beth

Pictured with me are two other women with ALS. We were in Washington DC in 2014 asking legislators for research dollars. Beth on the right is still in the thick of the fight. Sadly, Trickett in the red jacked died before an effective treatment was found.  Carrying her name, the Trickett Wendler Right to Try Act of 2017 will provide federal protection for states that have approved Right to Try laws.  Here’s a link to the recently passed California legislation AB-1668 if you would like to read more about it.

Quite frankly, I’m pissed. The solution is simple, even the FDA says it’s possible.  Yet most of the medical community and pharmaceutical industry are against it.

They are literally protecting me to death.

I spoke at a conference a few weeks ago about designing patient-centric clinical trials. Of course, I brought up Right to Try to the audience of pharmaceutical employees. One astute participant asked me, “What do you think needs to happen next?” I replied that the FDA needs to remove the risk from drug manufacturers and put into writing that compassionate use will not jeopardize their clinical trials. And secondly, and more importantly, the ALS patient community needs to get loud and demand access.

Remember in the early 80s when people were dying from AIDS? Treatments existed and patients didn’t have access. Angry, dying people acted up and persisted until patients got access to life-saving drugs. Now AIDS is a treatable, chronic condition. They didn’t passively wait decades for the FDA, medical professionals, and drug companies to work it out.

We can’t wait any longer either if we want to live.

Where does compassion intersect industry responsibility? I say here and now.  I will not take no for an answer and neither should you. Ask your neurologist for access to drugs in phases two and three. If he or she says no, find a neurologist who will support you.  If your state hasn’t passed Right to Try legislation, ask under the Expanded Access program.

My ALS friends, we must unequivocally and unilaterally persist.  We cannot stop when we hear a no. Go around it. Start a social media shit storm. Do whatever it takes. We have to because our lives depend upon it.

I’m Forgiven and Free, extremely persistent and will be putting Right to Try to the test

p.s.
Please share this post and add your wisdom as to how we can make this happen. Imagine  if several hundred or several thousand of us showed up in our power chairs! I just had a vision of us being arrested and the officers having to use Hoyer lifts to get us into the police cars. That would be fun. Let’s do this.

 

Inspiration

The act of breathing in.

The process of being mentally stimulated to do or feel something, especially to do something creative. 

The supernatural work of the Holy Spirit.

I received a pleasant surprise in the mail today.  This picture of my precious grand daughter giving me a kiss was on the cover of a pharmaceutical company’s annual report. A similar picture hangs in the company’s board room along with pictures of several other patients. The CEO wants to remind board members that serving patients is their inspiration.

I heard today that inspiration is closely tied to creativity and ultimately connected to hope. Oh Lord, I need hope. I have down days in which hope eludes me. I have thoughts of life with ALS being too hard.  It’s a cruel disease. All thoughts of life-extending interventions are off the table. Just hunker down, this will be over soon.

Ok. I can’t stay there. It serves no one.

Hope is what moves me from despair to gratitude. I think about what inspires me to keep living:

  • The love of God, my family, and friends
  • Serving and encouraging others in creative ways
  • Being present and finding gratitude in the moment

What’s your inspiration? Leave a comment so we can learn from you.

I’m Forgiven and Free and inspired by you!

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Live Long and Prosper 

My latest ALS progression has me looking like Dr. Spock.  I noticed that I can’t close the gap between my middle and ring fingers — Live Long and Prosper!

This got me thinking about what it means to live long and prosper. What does that look like?

In the Broadway Musical Hamilton, George Washington tells an eager young Hamilton, “Dying is easy, young man. Living is harder.” When I see people living in the advanced stages of ALS, I would have to agree with General Washington. Living is harder.

Yet, my plan is to live — live long and prosper. But how when faced with debilitating loss? This has been working for me so far:

  • grieve the loss
  • adjust with technology or assistance
  • grieve the loss
  • adapt to the new normal
  • return to gratitude
  • repeat

What loss or disappointment are you facing today? I won’t tell you to get over it. It’s not that easy. I will encourage you to grieve, adjust, grieve, and adapt. Whatever that looks like for you. 

Oh, and don’t forget to laugh! Here’s a picture of my new foot tattoo.

outoforder

I’m Forgiven and Free, living long, and prospering

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