We all know where good intentions can lead. I thought about that while reading about Seattle’s new ban on plastic straws.
There is a growing global wave of bans on single use plastic products—straws, stirs, utensils – that aren’t often recycled. Policymakers want to fix the awful issue of plastic in the oceans, but there are people with physical disabilities who use plastic straws to drink because they can’t lift a cup or if they don’t use a straw, they run a significant risk of choking to death.
At least in Seattle, there is an exception for people with medical conditions who require straws, but it is not well publicized and suggested alternatives are not viable. The most likely situation is that restaurants and other watering holes just stop carrying them. Most of us with conditions have to carry supplies – medication, equipment, etc. – with us, but we all forget. I have run out of insulin often at work because I didn’t know I didn’t have enough to get me through the day, and keeping a medication on premises that expires in a month doesn’t work that well. For something as vital as getting a drink, this ban adds significantly to the burden we already have.
Difficult as the straw ban will be, it pales in comparison to the possible impact of new policies intended to address the opioid addiction crisis. I am not going to speculate about the intentions of the manufacturers who lied about how addictive opioids are or the doctors who took money to prescribe. Hopefully they will be held to account like cigarette manufacturers were when we discovered they had done something similar.
No, the problem we need to address is what states perceive as a solution. Many are instituting measures that would limit providers’ ability to prescribe. On the surface, it sounds like a logical solution. But the unintended consequences could be severe.
- Increased administrative burden: office and hospital administrative staff are already stretched thin because of the cost of doing business. This would stretch them even further.
- Stigma and restrictions: it’s all very well and good to be wary of a class of drugs that has caused so much misery, but there are plenty of patients who have a legitimate need for strong painkillers to treat severe pain. If the patients who need the medications can’t get them, they will be reduced to a state of existence, as opposed to living a life. And terminal patients, for whom palliative care is vital for maintaining dignity and comfort – addiction is not really an issue if you have weeks or months to live-- will wait in misery for death to come.
- An excuse for industry: insurers and pharmacy benefit managers (PBMs) hardly need another reason to delay or deny filling expensive prescriptions.
I have not heard a good solution to this one. Usually, I adhere to the theory behind our legal system (admittedly overly idealistic) called Blackstone’s Formulation, that it is better to let 10 guilty people go free than to imprison one innocent person. Translated for this situation, that would mean anything other than a solution that would punish the chronic pain sufferers for their conditions. I can’t make that work here since those addicted to opioids would be cast as the “guilty” ones. But they are victims, too, victims of a system that abdicated its purpose and its duty to put profits over patients.
So, what can we do? The only thing that comes to mind is increased patient engagement. We are headed in that direction, but slowly, too slowly to mitigate the negative effects of this latest slate of legislation.
I don’t think we as patients can wait for them to find us. At a few of the conferences I’ve attended, I’ve heard industry representatives speak about how difficult it is to find patients who want to be involved in research. This seems like an odd disconnect to me, as I am very aware of how vocal the online communities are. I bet nearly all of us, if given the opportunity to improve some part of the process/drug/system, would jump at the chance.
So, in the spirit of prevention and planning ahead, pick the entity (insurer, legislator, pharmaceutical company, etc.) you think is the biggest problem, and look up their public affairs office. Write or call or email or tweet with a message that if they ever decide to address X problem, you, as a user, would be happy to assist. Let’s see what happens!