Our Caregivers Bill in Maine

On June 28th of this year Maine Governor Janet Mills signed into law "Resolve, Directing the Department of Health and Human Services To Allow Spouses To Provide Home and Community-based Services to Eligible MaineCare Members".  The bill was inspired by my wife and Co-Founder of The Hope-JG Foundation, Linda Gregoire and was Sponsored by State Representative Patrick Corey. 

As many ALS families have discovered, Medicaid has a series of programs which fall under the umbrella of Community Based Services. Essentially, these programs encourage and enable families to keep a homebound patient at home. The alternative is to place their loved one in a Long Term Care (LTC) facility which arguably has a negative impact on the quality of life of the patient and the famIly. And it saves the State millions of dollars because Mainecare doesn’t have to pay an LTC facility’s fees for a room, meals, supplies, etc. 

The specific program I’m in, for example, is the Participant Directed Option (PDO). I am allotted a specific number of hours each week,  to hire personal assistants for my care. Previously I could hire any relatives except my wife. Spouses are specifically excluded by ruling of the Centers for Medicare and Medicaid (CMS), unless the State applies for a waiver. Our bill does that. Until our bill was signed in June only 17 states had similar legislation.  

As with other terminal diseases, ALS impacts the entire family. Not long after my ALS diagnosis, I was forced to walk away from my small business. As a small start-up, I had no retirement plan or other benefits to bring with me. I was actually blessed to have my business partner buy my interest in the firm, relieving me of a massive debt load. SSDI is my only source of income. Furthermore, Linda has had to severely cut back her work schedule in order to direct my care and care for me during the many hours, particularly evenings and weekends, when no one else is here. Linda averages about 4 hours of sleep each night, partly to complete household chores which I used to do and also because I often wake at night with a toileting need which requires assistance.  ALS is a humbling disease for both patient and caregiver. 

 Every Family Caregiver like Linda is faced with massive physical, financial and psychological burdens, even with the extra hands which PDO provides. 

• The workload of Family Caregivers at least doubles, since the spouse is no longer able to "pull his/her share of the load".  In addition to the work she did to clean our house, laundry, etc., Linda now does home repairs, yard work and everything I did - including cooking for one. Not long ago, a component of my wheelchair came loose. Linda grabbed her now legendary purple tool kit and, in her pink pajamas at 10 PM, troubleshot the problem and made the repair.  .

• Family Caregivers invariably lose income, Social Security credit, health insurance (Linda hasn't thad Mainecare since our son graduated High School.. He graduated from college two years ago If she becomes ill because something that has been ignored over four years, my likelihood of survival decreases dramatically.  

• Her access to educational opportunities, to prepare for life after my eventual demise, are limited due to income and time constraints.  Family Caregivers deserve access to innovative educational opportunities  to prepare them to be productive, tax paying citizens after their caregiving days are done.  Without this kind of support, the.odds of Family. Caregivers becoming a beneficiary of the DHHS system increase dramatically.  What is the cost to the state of just 10 Family Caregivers are forced into welfare instead of being launched into the workforce?

Linda and I have been counseled by multiple Social Workers and Case Managers, to get divorced. “It’s only on paper.” they say. It is unimaginable to us, that the government not only tolerates, but endorses programs and benefits which encourage – and in some cases, leave married couples no choice other than, the dissolution of a marriage. .. Yet, in some cases it’s a matter of financial survival.    Linda could have health insurance and probably other forms of government assistance if we divorced “on paper”. I respectfully submit, if it’s just a matter of paperwork, any laws or regulations that require the dissolution of marriage in order to qualify for Medicaid,  be changed. It’s time for our social service rules, regulations and laws to align with the moral foundation of this great country.

Spouses of participants in  self directed home care programs, are de facto Natural Caregivers. With few exceptions, husbands and wives abandon careers, social connections, personal aspirations and financial security In order to care for their ailing spouse. They sacrifice all this and much more in exchange for an often thankless and always overlooked, 24/7 job. A job rooted in love, but personally physically and emotionally.all consuming – and in the process they-save their State money. 

Because of this dedication to their spouse and the personal sacrifice they invariably make, Family Caregivers should be able to be paid the equivalent of a fast food wage - the PDO pays $12.75/hour.  Linda has slept on our living room sofa for 5 years, which is the time I haven’t been able to get upstairs and in bed. She wakes with backaches and usually goes to bed with a headache. She does more physical labor by 11 AM than most people do all day. Unfortunately, Linda’s (while special to me) story is typical of Family Caregivers everywhere. 

We’re proud to have had a hand in this important legislation for Maine Caregivers. But it’s just a first step...stay tuned. 

    

Thanksgiving Perspective

“Who’s around the table is more important than what’s on the table.” 

By Guest Blogger Linda Gregoire

I was asked yesterday by a caregiver of a new tube feeder how we handle holidays that are celebrated with food. We all want to do whatever we can for our loved ones with a feeding tube to make life easier and normal , so I really appreciated her thoughtful question . 

The last 10 Thanksgivings we’ve been faced with small incremental changes that we’ve adapted to because that’s what you have to do with ALS. I always say “if you don’t go with the flow, you get caught in the rip tide” if anyone has had the experience of a rip tide you know what I mean..... the more you try to fight it the worse it gets, if you trust and swim in the flow you’ll be safe. So this morning after I started John’s feed and he fell asleep peacefully while his tummy was being filled , I realized how at peace he is with his current situation. In the beginning with his new tube , we struggled until we got him on a healthy formula. He still ate for pleasure by mouth, so a bowl of .pistachio ice cream was eaten while formula was finding its way into his tummy. He had the best of both worlds haha.  

I think the two saddest days for him was when he could no longer eat steak,  one of his favorite meals . That came early on , as it’s so hard to chew. The second was about a year ago when he would sneak a hand cut French fry when Matt and I would have an Elevation Burger . He choked so bad I almost thought of calling for help.  Once the choking passed he looked at me and shock his head “no” . I asked no  more for now ..... or no more forever ? Tears welled in his eyes and I knew ....no more forever and we both cried. The one thing he still can take by mouth and never chokes on is a small piece of communion bread and a sip of “wine” (grape juice) at church and God willing he’ll be able to forever. 

So as Thanksgiving approaches , it made me think how we’ve handled the “Holiday  meal” .  We gather at my sister’s with as many family, friends and dogs as we can squeeze into her home ....which can be 20-25 people and up to 9 dogs . The food has been mostly grown/ raised  by my sister and brother in law which is a labor of love . It’s prepared with everyone in mind ....oyster stuffing for some and regular stuffing for the rest of us 😉.  We all share in bringing what we can . We enjoy each other’s company and catch up on life . Then we gather at the table , elbow to elbow , we remember our family that’s with us in spirit and give thanks for those we still have  with us to love . John is seated at the table with his own spot  and place card as he enjoys “his dinner”  too . He’s  the only one that has  his electronic device at the table because  it’s for speaking ......and he’s the self appointed one to keep track of the football game for the entire table 🏈. That’s as important as cooking the turkey haha . We chat , pass food, laugh and oh yes we eat . Thanksgiving dinner is more about who’s around the table then what’s on the table. We feed our bodies and enjoy the food , but more importantly we feed our souls with love and thanks for all we have.

So for all our tube feeders, join in the feast, give thanks and feed your soul on love and life ❤️ . This is what I’m grateful for everyday of the year not just the days of November....Happy thanksgiving to you all  and God  bless you all .

NOTE:  November 28th is Giving Tuesday. If you’d like to support the work of The Hope-JG Foundation supporting families with ALS this holiday season, please donate at: hope-jg.org or by starting a campaign choosing us as the designated charity. Happy Thanksgiving!

Should the Dying Have the Right to Try Experimental Treatments?

Maine is in line to become the 6th state to pass Right to Try legislation. State Representative Richard R. W. Longstaff (D - Waterville) has introduced a bill which will have a public hearing before the Joint Committee for Health and Human Services on April 6th. The proposed bill (LD180) is titled "An Act To Allow Terminally Ill Patients To Choose To Use Experimental Treatments".

I received an email from the HHS Committee Clerk as I was watching Tweets and Facebook posts from a rally in DC by ALS patients, caregivers and advocates in support of the FDA allowing ALS patients the right to choose to try a drug named GM604. GM604 has passed a small Phase 2A trial. The results of the trial appear promising as have many of this drugs predecessors, which failed to show efficacy in later stages of research. 

However, the failure or success rate of any "experimental" drug isn't the issue. In my view the growing "Right To Try" movement - especially for ALS patients and their families - is about getting the government out of the way of protecting an informed individual from himself.

The fact is, there are very few afflictions for which modern science has failed to find multiple, at least marginally effective drugs and therapies for. In the 76 years since Lou Gehrig put ALS into the public consciousness, the FDA has approved one drug for ALS. That drug is known as Rilutek or Riluzole. Research has shown it to extend life expectancy by three months. A long way from a cure.

There are very few, if any forms of cancer for which there isn't some form of treatment. I'm certain there diseases which are statistically as (or more) rare than ALS which have no cure. My point is, the diseases for which there are no effective treatment to even retard the disease process are few and far between. ALS remains a riddle.

There is much concern in the research community over the Right To Choose. I understand and respect the concerns of researchers who claim giving access an unproven drug, especially to patients who don't meet the trial criteria,  will jeopardize the data that is so important to verifying efficacy. As an ALS patient, I respectfully say: Get over it.

I'm dying. I have a brain that still functions moderately well (although my wife may disagree on some days). There are no options the traditional medical community can offer me, except Rilutek and moral support. With all due respect to alternative practitioners and their patients, been there done that. In my experience if the alternative practitioners had anything of value to offer, they would be open to scientific scrutiny, doing studies and demonstrating the efficacy of their treatments as well. People certainly have the Right To Try alternative medicine. I just remain a skeptic.

So, with no options, a healthy brain and an appropriate level of information, why shouldn't I be allowed to try a drug that has shown promise in a legitimate Phase 1 (or beyond) trial? Should I not be free to risk dying sooner than I might if I didn't try? 

Be careful how you answer that last question. It's a trap of logic. If you answer "No, you don't have the right to try.", then we should ban sky diving and rock climbing. Period. Those are inherently risky activities which present the risk of death. Do healthy people have more freedom to assume risk than the terminally ill among us?

The current drug approval process of the FDA is archaic. It hasn't undergone significant scrutiny or change since it started in the 1960's. Add to that an approval pipeline that is clogged with applications for new toenail fungus and erectile dysfunction drugs, because that's where the money is, and you have a process which doesn't so much protect the public as it does rubber stamp the most profitable products for the pharmaceutical industry. (And yes, I understand that the profits from popular, mass market drugs help fund R & D for other drugs. Just makes one wonder who the FDA really works for.)

Upon first read  Maine's proposed legislation isn't perfect. For example, the draft bill's definition of "Terminally Ill" is: "...a disease or condition that, without life sustaining measures, is reasonably expected to result in death within 6 months." This definition most likely would not cover ALS patients.  It is interesting that the 6 month timeframe aligns exactly with the requirement for a patient to qualify for Hospice care. More interesting is that most, if not all Hospice providers won't provide "life sustaining measures" to patients in their care. So...if the law passes as is, patients will be forced to choose between Hospice and Right To Try.

Regulators, researchers and drug companies have valid concerns regarding Right To Try. They should be part of the dialogue. But they should also be painfully aware that this issue won't go away. Healthcare advocates and families facing terminal disease are demanding the Right To Try. The horse has left the barn, as they say.

Regulators, researchers and drug companies are free to oppose the Right To Try. Just as I should be free to try. Let's all work together to arrive at a solution that works for all, shall we?