I didn’t even bother to take my humor out of the jar today. I am having one of those days with regard to healthcare when I just want to stick my head out the window and yell “I am mad as hell.”
We are fortunate in that through social networking sites like Twitter, Linkedin, and blogs, we have each met hundreds of very bright healthcare professionals. Using the Kevin Bacon Seven Degrees of Separation test, I started believing that there was no healthcare question our mutual network could not answer.
I am afraid I may have found one of those unanswerable questions, and unfortunately, this question means a whole lot more than any bits and bytes question about healthcare IT, electronic health records, and patient experience management.
A few days ago I wrote of a friend of mine and mother of three youngsters who has Myelodysplastic syndromes (MDS). According to what I have found online, she won’t have it next year; may not even have it in six months.
Her best shot was that one of her five siblings would be a match for the bone marrow transplant she needs. They are not.
So here we are in a country whose healthcare system is capable of doing almost anything for anyone. ‘Almost’ is the critical word. Gifted physicians, billion dollar hospital systems, mammoth, global payors and pharma companies.
Where does that leave her, and where does that leave us if we have the misfortune of being in her position? For starters, you need to learn how to raise money; a lot of it. You need to get good at fundraising, and you need to do it quickly. We started a web site to help the family cover the hundreds of thousands of dollars not covered by their insurance company, and believe it or not, it looks like through the generosity of many many people, we may have that part under control.
What next? In less time than it takes to change your oil, and with no prior experience, you need to figure out how to run a successful bone marrow matching campaign. We somehow stumbled upon the Be The Match Registry (www.marrow.org) and are learning on the fly how to put this in motion.
What has been so disappointing is learning in spite of all the healthcare resources we have in this country, the heavy lifting, at least in her case, must be done by the people least qualified to do any lifting; the family of the one fighting the battle.
Statistically, our healthcare system is capable of healing almost every disease. This is all well and good if you are writing an article for the NEJM—that is, as long as the law of large numbers comes into play, patients can be optimistic. Where the whole process breaks down is over a single letter, an ‘s’.
Patients to patient. When you take it down to the level of a particular patient, someone who breathes and cries, someone with a family, the person who has no control over their illness winds up being the one who must take control. They must do it rapidly, they must do it well, and they must do it without any prior experience.
What is even more unfortunate is her case is not unique. There are thousands like her fighting their own battles, and these people are caught somewhere between a system unable to help them and a system unwilling to help them.
I sit here on the sidelines with such limited healthcare skills I am lucky if I put on a band-aid with the correct side facing up. Matters of life and death should not be left to those of us without any experience in life and death. We may actually wind up being able to help her, but if we do it will only be by God’s grace, tenacity, and dumb luck.
So, today is published a 277 page tome about certifying a healthcare IT application. You know what—I do not care. I may tomorrow, but tonight I just want to wallow in my ineptitude and my anger.
If you happen to know anything about MDS or bone marrow drives that may be helpful to us helping her, please let me know.
Thanks for letting me rant.
I completely agree with you, I think we have realized this problem, but with all the legalities and the behavior change required, shifting gear is not going to be a simple feat. As for the ranting, I appreciate the tons of good posts from you. If I come across anything useful I will past in onto you.