Local man battles for access to new ALS drug
In 2007, North Fort Myers resident, Rick Jobus, was diagnosed with Amyotrophic Lateral Sclerosis, ALS.
“According to my doctors, the fact that I don’t yet require either a ventilator or feeding tube is somewhat remarkable,” Jobus said. “However, they point out that both could be necessary at any moment. The typical death scenario is ‘respiratory insufficiency.’ Which is a nice way of saying suffocation. As for prognosis, it is the same as it always has been. Death.”
Welsh poet, Dylan Thomas, wrote in his poem, “Do not Go Gentle into that Good Night,”
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Rick Jobus is going bravely, but not gently.
* ‘Involuntary Manslaughter’
In ALS Research and Development, a new drug, Genervon Biopharmaceutical’s GM604, shows early promise in slowing or stopping the progression of ALS.
“The problem is, traditional FDA approval of new drug applications averages 30 months,” Jobus said. “Many ALS death sentences (including his own) likely will be executed years before market availability.
“However, the FDA has at its disposal an Accelerated Approval Program (AAP) to allow for earlier approval of drugs that treat serious conditions and that fill an unmet medical need.”
According to Jobus, between 1992 and the end of 2014, the FDA has granted accelerated approval to 51 drugs for conditions that include HIV, leukemia, tuberculosis, third degree burns, and narcolepsy.
“Unfortunately, and confoundingly,” the FDA has refused to consider accelerated approval for GM604. The result, Jobus asserts, is “certain death to thousands of people. It is akin to involuntary manslaughter.”
*’We need national media attention’
Jobus is hoping to “jump start a public forum in which to quickly debate, and win, this battle.”
To that end, he has written to 60 Minutes, Last Week Tonight with John Oliver, NBC, ABC, CNN, and Fox News, to every presidential candidate, the FDA, ALSA, and MDA requesting their investigation.
“In the case of ALSA and MDA, they were kind enough to respond, specifically telling me that their objection to an AAP for GM604 was to protect ALS patients from negative side effects, diminished quality of life, and other unanticipated outcomes. I politely rebutted by suggesting that they were overstepping their custodial surrogacy, and asking what side-effects are they most worried about. Partial paralysis? Choking? Respiratory distress? Inability to talk? Death? We already have all that. Are they fearful that we’ll get worse? We get worse every day. As for unanticipated outcomes, having ALS is the epitome of the worst unanticipated outcome ever.”
*’Health care struck me as more noble.’
Jobus cannot communicate verbally. He communicated for this story in emails, typed with the middle finger of his right hand. He describes his condition as follows:
“With the exception of a few penguin-like, waddling maneuvers (desperately grasping a walker for balance) to transfer from chair-to-chair or chair-to-bed, I require a wheel chair for transport. My speech can border on the unintelligible. My lung capacity is down to 35% of where it should be. I am prone to bouts of choking when eating or drinking. I have minimal core strength. My range of motion is greatly diminished. Pain is occasional, unpredictable, but rarely severe.
“Prior to ALS,” he writes, “I had led an unremarkable life, largely characterized by good fortune. Work challenged me appropriately, and rewarded me fairly. My leisure time was filled with travel, golf, and basketball. My weight, blood pressure, and critical blood analysis predicted many robust years ahead.”
With a degree in industrial engineering from Bradley University in Peoria, IL, Jobus worked, ironically as it turns out, on the “manufacturing/supply side of the healthcare industry. Initially, I worked in reliability and quality engineering on medical devices (intravenous infusion, blood cell separators, and dialysis equipment) for hospital and clinic use. Later, I transitioned into pharmacy automation.”
Upon graduation, Jobus might have gone into the aerospace industry, but he chose healthcare because it “struck me as more noble. I worked on products that improved, and even saved lives.”
“I blamed it on sun and beerI blamed it on my shoes.”
Jobus believes that the first symptom of ALS that he experienced was in September, 2005.
“I was leaving a Pittsburgh Steelers football game, and fell flat on my face. At the time, I blamed it on sun and beer. Shortly after, I became prone to random stumbling. My left foot might get caught on a transition from tile to carpet, or maybe, while climbing stairs, it would hit the riser before clearing the top of it. The most serious clumsiness happened in a hotel parking lot in St Paul, Minnesota, late on a cold February night. I had been traveling all day, and was tired to the bone. As I made way from car to hotel lobby, my left foot dragged on the sidewalk. I fell forward, breaking my glasses, and cutting my forehead. These balance lapses I attributed to stress, fatigue, to getting older, and a lifetime of basketball. About this time, I also began experiencing an irregular gait during my daily recreational walks. I blamed it on my shoes. It wasn’t until June of 2006, while attending a trade show in Orlando, that I finally admitted to myself that something was wrong.” Jobus attempted to jog across a street between intersections. “Only I couldn’t jog. I resigned myself to surgery on my left ankle to undo all the damage done by myriad strains, sprains and on-going arthritis and tendonitis.”
The following December, after examination and X-rays, Jobus was referred to a neurologist, who, in February, 2007, informed him that he had Amyotrophic Lateral Sclerosis.
The week that followed “was a constant one-two punch of anger and depression.” Jobus went to UNC for a second opinion and received “volumes” of instructions on how to live with ALS. “Although well intended, it was summarily hopeless-here’s how you will die, here’s how long it will take.
*’I have not had a single day without hope.’
Jobus says that staying current with ongoing research in his fight to defeat ALS helps keep him optimistic.
“Sure, I get angry, particularly as some new symptom manifests itself. Occasionally, I experience a brief wave of depression. But mostly, I fight.”
He has also consulted with health care professionals “offering treatment outside of established thinking in the U.S. I believe that this approach has added days to my life, and life to my days.
Not only has its progression been mercifully slow, the perspective gained has made me a better man. And, if not for ALS, I would not have met my wife (and her amazingly supportive family), and I would not have reunited with God.”
* ‘My angel incarnate’
“I met my wife, Catherine, nearly 3 1/2 years post-ALS diagnosis, and on an on-line dating site, no less.” Jobus had forgotten that he had a profile on the site. When he received a message from Catherine and viewed her profile, “I was immediately drawn to her, even without a photo, but what did I have to offer?” Two weeks later, he responded. “I told her that I had ALS, and if she was not familiar with the disease she should research it, and get back to me if still interested. To my complete and utter shock, she replied the next day. We arranged to meet, commencing a courtship that redefined ‘whirlwind.’ We married 2 1/2 months later.
“Catherine is an intelligent, spiritual, fearless, hilarious, adventurous lover of life. She motivates me to constantly battle ALS. She is emphatic that I never give up. She is insistent that I never wallow in self-pity. She is vigilantly on the look-out for anything that may improve my condition. She is always there for me, selflessly, tirelessly, and cheerfully. Above all else, she remains convinced that I will emerge victorious. Catherine is, without a doubt, my angel incarnate.
“Her parents and children are God-sends, as well. Their love and support both nurture and astound me. They and Catherine are a primary reason that I am still alive. They are, unquestionably, a gift from God.
“I totally believe in God, and Jesus as God, and the Holy Spirit, resident in me. I believe that everything I experience, ranging from intense pain through total ecstasy, is a miracle. I talk to God nearly every day.
“When I was first diagnosed, my days were spent in unproductive dismay. Over time, and as the result of God’s persistent urging, I became diligent and forthright in prayer. Now I find peace whenever I pray. If not for ALS, I would not rediscovered God. While being a horrific ordeal, ALS has been, paradoxically, my greatest blessing.”
* A puncher’s chance
Jobus has written a poem about his experience with ALS, which concludes with the following:
Every day that you rise, be prepared to do battle; attack, do not hide.
For that may be your victory day, with new ammunition at your side.
No matter the size, savor every moment, celebrate every circumstance.
Believe with pure conviction that you always have a puncher’s chance.
If you would like to learn how you can help give Rick Jobus and the thousands of people in the US who are suffering from ALS a “puncher’s chance” of adding days to their lives and life to their days, visit Rick’s Facebook page at www.facebook.com/rick.jobus .
“If you would like to take action to support us, I ask that you harness the power of the internet. Video yourself saying, ‘I challenge you to join ‘Hope Now for ALS’ and demand the FDA approval of experimental drugs, of promise, to give ALS patients a chance to live.’ Then pour a bucket of ice water over a sign, of any construction, with the letters “FDA” printed on it. Post the video to Facebook, YouTube or any social media channel you prefer. Then please email it to me (firstname.lastname@example.org) and/or post to my Facebook page,” Jobus said.