Sunday, September 11, 2016

When the Medical Marijuana Controversy Hits Home

The fight to survive is fundamental to being human. Except for those who self-terminate, people usually do whatever it takes to survive. Despite my tour in Vietnam and travels over most of the earth, I have never been faced with my imminent demise. I worked hard and led a legal and relatively worry-free life. Until now.

Now, my wife has Lewy Body Disease (LBD). There is no treatment. There is no cure. Average life span from diagnosis is 1 – 5 years. We are one year into this nightmare. The outlook appears hopeless, but that doesn’t mean we won’t go down fighting. As my wife’s analytical capabilities gradually fade, the management of her care falls to me. That also means the fight to keep he alive also falls to me. In the case of LBD, like Alzheimer’s and Parkenson’s, that means doing as much research as possible – and relying on as large a network as you can muster to extend your research grasp.

In our case, we have seen experts in this field in Dallas and Houston, as well as where we live. We are open to trying anything but there are few things to try. Our mainstays are Namenda and Razadyne. Both treat symptoms but do nothing to slow the accumulation of amyloid plaques and tau tangles … and the corresponding death of brain cells. So far, those medications enable my wife to retain a near-normal level of cognizance, although without “executive functioning”.

She is also using a new prescription product called Axona. It’s a little “out there”. Because the dying brain does not metabolize sugar well, the Axona provides a ketone food that provides an additional energy source. She is also taking a plethora of supplements: turmeric, fish oil, co Q-10, vitamins, and baby aspirin among many others. The most promising of all the supplements is Pyrroloquinoline Quinone Disodium Salt (PQQ) (type “Lewy Body amyloid PQQ” into your browser to get articles like http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881056/. In general, “pyrroloquinline quinone appears to (1) inhibit the formation of amyloid fibrils (Aβ1-42; full inhibition at 70μM PQQ), and although it can also bind to α-synuclein this binding does not indirectly inhibit Aβ1-42 aggregation, and (2) to reduce the cytotoxicity of these fibrils on neuronal cells.” (https://examine.com/supplements/pyrroloquinoline-quinone/).

Another promising supplement I have recently added to my wife’s regime is hemp derived cannabidiol (CBD) capsules. As of June 2015, hemp derived CBD products are legal in Texas (as long as the THC component remains below 1% ). There is research to support the use of CBD as a medical therapy: http://www.ncbi.nlm.nih.gov/pubmed/19228180, http://www.leafscience.com/2014/03/05/marijuana-ingredient-may-cure-alzheimers-study-suggests/, and many others. My overall understanding of CBD is that it has antioxidant, anti-inflammatory, and neuroprotective effects. Like any other attack on the body’s cells, there is inflammation where brain cells are dying. That is the reason anti-inflammatory agents work. I also understand that the helpful effect of anti-inflammatory agents only applies in the early stages of LBD, so I expect the CBD benefit might be temporary.

What might not be temporary, however, is the second part of the marijuana equation, a chemical compound called tetrahydrocannabinol (THC) (http://www.sciencealert.com/marijuana-compound-removes-toxic-alzheimer-s-protein-from-the-brain). THC is the psychedelic component in marijuana. It is illegal in Texas. Currently, the use of both recreational and medicinal marijuana has been entirely legalized in the states of Alaska, Colorado, Oregon, and Washington. For most of the rest of us, anything with more than a trace of THC is illegal. It is also worth noting that marijuana is against federal law, regardless of what individual states do (http://www.ibtimes.com/marijuana-legalization-could-2016-be-year-federal-law-derails-cannabis-movement-2258515).

In other words, while credible medical evidence suggests THC could well help my wife, I cannot get the drug where I live. It is also worth noting that my wife’s need for THC could be temporary because the first effective drug against Alzheimer’s could be available as soon as 2020 (http://www.latimes.com/science/sciencenow/la-sci-sn-antibody-amyloid-alzheimers-20160831-snap-story.html). It would be a disaster to lose her just before a true treatment came on the market.

So what is the natural course one should take in such a situation? In my mind, it is obscene that something that could save my wife’s life is not available to me. Therefore, I refer back to the first sentence in this blog.

Thanks for reading,

James L. Hatch


Tina Donahue said...

It's my guess, Big Pharma is behind the restrictions on medical marijuana. After all, they wouldn't be able to corner the market and gouge people as they have with the live saving Epipen. May they burn in hell (if one exists). To let people in the end stages of cancer suffer because some misguided fool thinks they'll become drug addicts is as bad. Until we break up Big Pharma, this will go on indefinitely. When lifesaving drugs do come out, be prepared to be an indentured servant for the rest of your life to afford them. I feel for you and your wife, James. In a kinder world where common sense ruled, rather than greed, we'd already have remedies for our loved ones.

jean hart stewart said...

May I add my condolences and best wishes. The drug industry needs to be completed shaken up and get it back to where it is supposed to be...helping the sick. I get so angry at situations like yours. God bless....

Fiona McGier said...

Medicare for everyone. Period. Socialized medicine is the rule in every other civilized country in the world except ours. And the big insurance execs are busily pulling out of the Obamacard exchanges because though they are making a profit, it's not big enough for them or their shareholders. Because God forbid they shouldn't be able to extract obscene profits from the illness and misery of others. They are parasites on humanity.

Not being able to negotiate lower prices for pharmaceuticals is a travesty, leading to sick people having to choose between medicine or rent/other bills. Gauging the sick and dying for profits is unconscionable.

Fiona McGier said...

As for legalizing THC as a drug, I can't believe we're still having this discussion, so many years after the "hippie" days. Colorado and Oregon are swimming in tax money, and wow, the states haven't fallen apart either. People just going on about their days, working, living, and the sky hasn't fallen down just because people can choose to get a little high, instead of drunk, to relax after a hard week at work.

Your wife, and so many others, could benefit right now, from the active elements in pot. Never mind smoking it, which is unhealthy, but she could ingest it, in foods and candy. If it would help, I see no reason that she should not be able to access this benevolent drug; especially when it's so readily available in the states where it's totally legal for any reason. There are stores all over Colorado that boast of their quality. Perhaps you need to schedule a visit. Just sayin'...

James L. Hatch said...

Hello Fiona, Jean, and Tina.

I am sorry for the lag in responding to your kind comments. It seems every second is taken these days. I agree with so much of what you all have said, and can only add a few items you might not know. First, the diagnosis of Lewy Body is quite difficult and requires some esoteric materials and equipment. The diagnosis is necessary to guide what little treatment there is; however, NONE of the diagnosis is covered by insurance. In one case, I had to pay $4,500 up front for a single shot prior to a PET scan. In another, the DatScan was $7,500, none of which was covered by insurance. Co-Pays for the medications are also high, up to $50 per prescription, and none of the "experimental" meds are covered (e.g., Axona, CBD oil, PQQ and the like). Those things cost hundreds of dollars per month. I'm not sure what people do who cannot afford this, but my heart goes out to them. I suspect the insurance companies know the disease is fatal no matter what anyone does, so they just walk away. One of the nurses in Houston also agreed with that. Where there is no hope, there is also no help. Nevertheless, we are trying whatever we can find without regard for the cost or legality. We will resolve all those issues over time. Money is not our concern now, nor is the law. If we can extend her life until 2020, we might be able to be part of the first group of survivors for the new med I mentioned in my blog. That would make everything worthwhile.

Relative to legalization of THC in Texas, I am not holding my breath. Still, according to a local law enforcement officer, there is hope. First, officers are not pursuing people actively relative to THC medical use. Second, low THC (<1%) CBD oil is legal here now. There is also a movement to completely legalize medium THC concentration CBD oil over the counter, and there is a possibility that high THC CBD oil might become approved soon by prescription. Our doctors here would write the prescription IF the law is changed. In the interim, they recommend we go to Colorado to get it and just drive it home. The reward vs. possible problems has tilted to the reward side for us.