Stick a Needle in My Eye?
September 3, 2013
by Mark Dunning
We don’t fear blindness. We don’t fear hearing loss. We fear what blindness and hearing loss bring. We fear social isolation. We fear loss of independence. We fear an inability to provide for ourselves and our families.
Wait. That’s not it either. What we really fear is loss of happiness. That’s what it’s all about. We want to be able to work so we can have the money to do the things that make us happy (like, um, eat). We want to be able to learn and then continue to do the activities that make us happy. We want to be socially active because that makes us happy. It’s all about happiness.
So when I read Jennifer’s take on the current clinical trials for acupuncture I wondered if maybe a focus on the clinical impact, at least in this case, was missing the point. As usual she does a great job breaking down the science and pointing out the weaknesses of the trial. It is pretty obvious that the science behind it is not great. I don’t think it reaches the level of sham, but it sure seems a bit sketchy. It certainly convinced me that it is not something I would pursue for my daughter.
On the other hand, I know rational, extremely well informed Usher adults whose opinions I trust implicitly who are considering pursuing this therapy because they heard about the trial. These are not desperate people who are easily fooled. Some of them were probably in the same room with Jennifer at ARVO. Yet they reviewed the variables and information that Jennifer presented, the same data that convinced me NOT to pursue the treatment for my daughter, and came to the conclusion that it was worth trying.
These folks are adults with severe vision problems, but I want to reiterate that I don’t believe them to be desperate. They would all prefer a return to normal vision, but they live interesting lives. They are also very active people, not the type to sit around and wait for someone else to find a solution to a problem. They get involved. That is what makes them happy: doing something, anything, to make the world, their world, a happier place.
So what if a treatment had no effect other than to provide some level of happiness? It’s not really fixing your vision in any way but it makes you happy. If happiness is really the ultimate goal for all of us, is that a bad thing?
Jennifer gave you her scientific evaluation of the acupuncture trial. What follows are my 11 commandments for evaluating potential treatments on a happiness scale in descending order of importance. But before I get to that, let me take a moment to distinguish between the acupuncture trial and acupuncture treatments. This is a bit of a unique case. You can elect to have the treatment but NOT be part of the trial. You would have to find someone capable of administering it and you would do so before any definitive studies are published, but you could have the treatment.. Keep that in mind as we go through the commandments because the rules will be different for trials versus treatments.
- Is it good science? You don’t want to be taken and you don’t want to waste your time. That will make you unhappy. You only want to be involved in something that has a legitimate chance to work. Jennifer is right. Good science works. It doesn’t mean that a good scientific trial ensures a treatment will be successful. It might actually be the opposite. But proving beyond a doubt that a treatment is highly unlikely to work is often just as valuable. It moves the ball forward. Jennifer has described what makes up good science in the past, but it involves as large a cohort as possible, a control group, detailed data collection, and strong oversight from an independent group with an excellent reputation. The acupuncture trial described was funded by an NIH grant, which is pretty strong oversight, but it falls flat on my other criteria. However, having the same treatment used in the trial but not actually being enrolled in the trial has no oversight whatsoever. A treatment has to have significant research proving its efficacy (ie, a successful trial that meets the criteria I state above) before I would have it. Which bring me to…
- Are there significant results? Trials usually only last a long time because they have shown promise. The vitamin A trial has been going on for decades and involves hundreds of people. They have good published, peer-reviewed data that show the potential benefits of vitamin A. This is different from conclusive data, mind you. There are still questions and risks. But this is very different than this acupuncture trial where only a handful of people have been treated for a short period of time and there is definitive data on it’s effectiveness. That’s not very convincing to me and certainly not enough for me to seek the treatment for my daughter before the trial is completed. If getting your vision back will make you happy, you want to be involved in something with promise, not just hope.
- Can the treatment cause long term damage? Remember, the goal here is to make you happier in the long run. You don’t want to come out worse than you went in. You have to evaluate the risk. The acupuncture treatment seems pretty benign to me. Of course, this is where Jennifer screams, “Did you read the collapsed lung story!?” Yes, yes I did,and I don’t like needles at all but acupuncture is used by a lot of people with little long term damage. So I still say the long term risk is minimal. One quick aside: Since we’re talking about the potential of a treatment to make you happier, this commandment pulls all recreational drugs off the table. You might take something that makes you feel happy, but it is most likely causing you long term damage. That’s not a treatment that improves your reality. It’s an escape from reality.
- What is the reputation of the institution? Institutions earn their reputations through past successes and the development of processes that work. They have the best people and have seen a lot of folks just like you. Peace of mind increases your happiness potential. Johns Hopkins is one of the best in the world. That’s a good sign for the acupuncture trial. The treatment? Well, that’s different. That would be performed by an acupuncturist in private practice, outside the purview of Johns Hopkins. So reputation of the institution doesn’t factor.
- What is the reputation of the doctor? I have never heard of the principal investigator for this trial. I don’t know anyone that knows her. That doesn’t mean she’s not a great person or an excellent Optometrist. I just don’t know her. In contrast, I not only know the reputations of investigators in Usher 1b gene therapy trial (they are excellent), but I also know them personally. I trust them. I’m inherently skeptical of doctors I don’t know. That skepticism makes me uneasy and uneasiness does not equate to happiness. Again, don’t take this as any statement about the particular doctors involved. I don’t know them at all. That’s the point.
- How intrusive is the treatment? This is different than long term damage. Gall bladder surgery, for instance, is often fairly safe and generally produces excellent results. But you feel terrible for quite a while afterward because it is so intrusive. Feeling terrible impacts your happiness, obviously. Don’t trade months of your life for a promise. You want a proven treatment that is a near guarantee. Assuming the needles go in the right places, acupuncture makes me squeamish, but it does not seem very intrusive.
- How painful is the treatment? Do you want to be tortured, even for a few minutes, for a promise? Me neither. Torture does not equal happiness. I really don’t like needles, but my understanding is that acupuncture is not terribly painful. Electric current through needles is a little different, though. That would give me pause.
- How much does it cost? I know I have this listed near the bottom in terms of importance, but that’s only because I would evaluate the happiness potential of a treatment using the other criteria first. The cost is a big red flag. This is where the shysters come in. They sell you a treatment doesn’t really hurt and holds promise. Hey, why not? You leave thinking it helps. They empty your pockets. You realize later that it was all a sham. Adults with Usher have an 82% unemployment rate. They cannot be throwing money around. Not many people think having less money in the bank is the key to happiness. I don’t know the answer to this for sure, but since the acupuncture trial is a clinical trial funded by NIH, the cost will probably be negligible. The treatment? Again, a different kettle of fish. You pay for that out of your own pocket.
- Where am I at today? This is probably the point where my Usher adult friends and I diverged on the acupuncture treatment. Their vision is very poor. It is unlikely that this acupuncture treatment will damage it further and the treatment appears unintrusive enough that it would not preclude other future treatments from working. So why not try it? What have you got to lose? But for my daughter? Um, no. She’s on the other end of the spectrum. We feel that we need to do everything to protect her eyes and that includes avoiding anything that has even the slightest chance of damaging her vision. Plus, we have the time to wait for something that has better science behind it. There is less urgency.
- Am I making the decision for myself or for my child? It’s one thing to decide to have yourself stuck with needles. It’s another thing to have your mom and dad decide for you. Bella is much better with needles than I am, but a child will not be as aware of the long term goals of a treatment as an adult. They are just going to see that they get stuck with a bunch of needles every once in a while. That doesn’t seem like it would make them very happy.
- Am I making the decision rationally? Finally, are you sure you’ve thought this through rationally? Never, ever, make a rash decision out of panic. And that is very hard to do when you have a degenerative disease for which there are currently no definitive treatments. We’ve all rushed in to something and been unhappy about it later. The good news is that if you’ve evaluated a treatment using the first ten commandments, you’ve gone a long way toward making a rational decision.
One final note: We are sort of happiness experts here at the Usher syndrome blog. Seriously! Even Jennifer. Heck, that’s the whole goal of this blog. Knowing you are making good decisions will make you a happier person and how can you make informed decisions if you don’t get the bad news with the good?
That’s why we have built the Usher Syndrome Coalition. An Usher syndrome community allows us to make friends and get information so that we can guide our lives in a way that ensures we are the most happy. I often write about living in the moment and not predicting the future. Hopefully the Usher Syndrome Coalition makes this moment in your life a little happier.