Dr Robert Massie: Patient Needs Matter for Quality of Life to Not Suffer

Whereas patient care was often bogged down in bureaucracy when he was younger, Robert K. Massie Jr, PhD, MA, of the Society for Progress, notes that hospitals and caregivers are now increasingly paying attention to what makes sense for optimal patient care. Massie was born with severe factor VIII hemophilia in August 1956 and contracted HIV in 1978, as well as hepatitis C, from contaminated blood products.

Transcript

Having learned to self-infuse at age 12, could you fully comprehend what your condition entailed?

Well, look, 12 is pretty old. I was about to hit puberty, and I'd been dealing with this a long time. And of course, a lot of 12-year-olds think, “Why can't I just go drive to California?” They think of themselves as fairly grown up. That question about realizing and thinking about it was something that I thought about at ages 4, and 5, and 6, because when I went to school and I was wearing leg braces and I was different from other kids, sometimes the kids were accommodating and welcoming and sometimes they were absolutely cruel and rejected me because of my appearance. Learning to give myself [intravenous] injections was a really, really important example of a stupid bureaucratic system finally yielding to what was medically and humanly necessary.

When you have hemophilia bleeding, you have a sensation—this is internal bleeding, it's not cuts or anything like that—that, “Uh oh, something's happening.” I used to call it a feeling. And then you sense that joint is stiffening up a little bit and then the pain comes. And so the amount of time it took from going from a feeling to stiffness to pain could be measured in minutes or a small number of hours.

Now, if you had to have the feeling, realize it was something, go bother your parents, wake them up in the middle of the night, or tell your teacher, “I'm in trouble. I need to call my parents, have them come get me,” and then you had to drive to a hospital, you got to the hospital, they said, “How do you know you have hemophilia”—which they always did—"Well, let's call a hematologist,” who would take a long time to get there. The hematologist would then order factor VIII from the blood bank; that would take 2 or 3 hours. The hematologist might then call a pediatrician because my veins were slow…

So you could go from that early sign of bleeding to finally getting the critical factor VIII over a period of 4, 5, or 6 hours, and by that time, your joint would be so swollen, if it was your knee, you wouldn't walk for months. Or if it was an elbow, you wouldn't write again for a month. Whereas if you could get infused quickly, within minutes, you would stop it right there, the joint damage would be averted, the pain would be averted, and you could go back to regular life within hours or a few days.

But of course, at the beginning, how could people give shots on their own? What a terrible idea! How could children give themselves shots?

It came down also partly to money, so that if you waited until you went to the hospital, you often had to be admitted. And then you're admitted and you're paying hospital rates. So this was crazy for everybody. It was crazy for the hospital. It was crazy for the insurers. It was crazy for the families and the patients. And finally—it took a long time—they said, “Why don't we teach parents and then patients themselves to do this?” Common sense overcame all of these rules.

Now once I was able to do it, it dramatically opened up my life, because I could go on camping trips with my powder concentrate. I have done infusions in the bathrooms of airborne 747s on my way to Europe. It opened up freedom for me that then enabled me to travel, eventually go to college and to earn my undergraduate degree, and then to go on and get other degrees and so forth.

So that willingness to alter what had been a very rigid medical and legal understanding—which I understand where it came from, it's perfectly reasonable—once it was set in stone, it took a long time to get it out of stone and make a new arrangement.

We still see that all over the place: stupid rules that actually slow patients down. But they're less frequent, and hospitals and caregivers pay more attention to what makes sense. I have a nephew with hemophilia. His life experience is just radically different from mine, because of the improvements of technology and commonsense changes in the approach to care.