As you can tell, the video clip below won’t play. Oh well – makes me wonder why YouTube offered me the ability to post it to a blog if it wasn’t encoded. At any rate, if you’re really interested, I’d encourage you to go to YouTube, plug in the title of the clip, and watch it. There are three others from the same film up there as well.
These are the only parts of the film I’ve seen, but I was interested to discover it up on YouTube because the clips come from a film called Worlds Apart created by the Stanford Center for Bioethics. This is the same organization currently making a film with the working title “Citizen Scientists” about the rise of patient advocacy groups and their impact on scientific research. These are the folks that will be joining me for part of my next NIH trip. The Hermansky-Pudlak Syndrome Network is one of the groups they are studying as part of this project. They are looking at the process we’re undergoing for the Pirfenidone trial.
It’s interesting how the projects undertaken by this center so neatly dovetail with one another. Although this film was made years ago, I could identify with all of the short clips I found on YouTube. Clinical trials aside, medicine is so incredibly complicated. The human body is complicated, but medicine seems as though it can be further complicated by interpersonal relationships. Throw differences of culture, socio-economic barriers etc. into the mix and it’s a real testament to thousands of faceless professionals that anything gets done. Grin!
This clip, in particular, interested me because it’s of a doctor gently taking a patient to task for missed appointments. The woman answers, through a translator, that she had to put other life issues ahead of taking care of her immediate health. Her phone number had changed and she’d had to move apartments.
I find this frequently when I talk to HPS’ers. So often the immediate concerns of their lives, of providing for their families etc. seem so much pressing and urgent than an illness they might not yet even feel or might not develop for several years, or might not be ready to emotionally deal with. Many of our families come from a culture that is much more family centric than ours. They will put the welfare of everyone else in the family ahead of their own. It takes some gentle convincing sometimes to get them to see that their family needs them to stay healthy.
Talk about barely scratching the surface.
One of the challenges we’ve run into with some families in the HPS Network is the frequency of their moves. They get caught up with their family’s day-to-day needs and often never call the Network to update their phone numbers and addresses. Then, when an opportunity becomes available that they might be good candidates for, we can’t find them.
A disproportionate number of HPS families face huge socio-economic barriers. Families that often struggle to pay the rent every month tend to move more frequently. Families that have a wage earner who is legally blind and cannot drive tend to move a little more often. If you can drive, and whether by choice or necessity, you find another job in the same city, you might never think about moving. If, however, you can’t drive and you are dependent on public transit or paratransit systems which often are operated by counties and don’t serve entire metropolitan areas – a job change of even just a few miles can require moving the family so the HPS’er can get to and from work.
Sometimes we never know the reasons why.
One case that has haunted me lately is the story of Victor. (Victor is not his real name, but we’ll call him Victor.) Victor never knew he had HPS until he was diagnosed with pulmonary fibrosis. Actually, he was originally diagnosed with idiopathic pulmonary fibrosis, and I’m not certain how he came to figure out he really had HPS. At any rate, Victor’s lungs deteriorated at a rapid pace. Sometimes HPS’ers lungs deteriorate very slowly over years. But for some reason, Victor’s had gone down hill very quickly in the matter of only about two years. By the time he put it all together and contacted the Network, he was too sick to qualify for the Pirfenidone trial.
Victor went to great lengths to protect his wife and children. He didn’t want them to worry. As a result, I never got to speak with his wife. He decided to try for a transplant, but had run into all the obstacles and challenges that process offers up to HPS’ers. I tried to help, offering up our transplant success stories and sending journal articles about them to his doctor.
I tried to stay in fairly regular touch with him, but it wasn’t easy. For starters, I had to call him only during certain times of the day because he didn’t want to talk about HPS where his family could hear. Sometimes I’d call him and he’d sob on the phone. He was distraught and overwhelmed by his situation. Other times I’d call him and he’d be very distant. He had it all under control. There was nothing to worry about. The Network had offered all we could, which to his mind wasn’t much, and he was going to handle it on his own. Every time I’d call I never knew which Victor I was going to get – the guy that really wanted someone outside of his situation to talk to, or the guy that saw me as just another trapping of his illness and really preferred I’d just go away.
If I’d ever been sure which Victor was the “real Victor” I might have called more, or stopped calling altogether. I never really knew what I should do.
Then this winter the multi drug trial for late stage pulmonary fibrosis became an option. The first person I thought of when I heard about it was Victor. I hadn’t called him in a while because I got busy with the holidays, and because I was worried about whether he really wanted to hear from me. But now I had some news. I had something for him to check out at least.
I called, but none of his phone numbers worked. I sent a letter to his last known address, but it came back undeliverable.
I have no idea if Victor passed away, or if his medical issues took a toll on the family and they had to move. As far as I know, Victor – if he’s still out there – has no idea about the multi-drug trial.
Obviously I never went to a doctor’s appointment with Victor. We live thousands of miles apart. But, I suspect he was the same way with his doctors. You’d think that facing a life threatening illness, you’d do whatever you have to do to beat it. But life gets so much more complicated than that.
And, of course, just like the film presents we also face our own cultural issues. More on that later though. I’m really super tired tonight.
These are the only parts of the film I’ve seen, but I was interested to discover it up on YouTube because the clips come from a film called Worlds Apart created by the Stanford Center for Bioethics. This is the same organization currently making a film with the working title “Citizen Scientists” about the rise of patient advocacy groups and their impact on scientific research. These are the folks that will be joining me for part of my next NIH trip. The Hermansky-Pudlak Syndrome Network is one of the groups they are studying as part of this project. They are looking at the process we’re undergoing for the Pirfenidone trial.
It’s interesting how the projects undertaken by this center so neatly dovetail with one another. Although this film was made years ago, I could identify with all of the short clips I found on YouTube. Clinical trials aside, medicine is so incredibly complicated. The human body is complicated, but medicine seems as though it can be further complicated by interpersonal relationships. Throw differences of culture, socio-economic barriers etc. into the mix and it’s a real testament to thousands of faceless professionals that anything gets done. Grin!
This clip, in particular, interested me because it’s of a doctor gently taking a patient to task for missed appointments. The woman answers, through a translator, that she had to put other life issues ahead of taking care of her immediate health. Her phone number had changed and she’d had to move apartments.
I find this frequently when I talk to HPS’ers. So often the immediate concerns of their lives, of providing for their families etc. seem so much pressing and urgent than an illness they might not yet even feel or might not develop for several years, or might not be ready to emotionally deal with. Many of our families come from a culture that is much more family centric than ours. They will put the welfare of everyone else in the family ahead of their own. It takes some gentle convincing sometimes to get them to see that their family needs them to stay healthy.
Talk about barely scratching the surface.
One of the challenges we’ve run into with some families in the HPS Network is the frequency of their moves. They get caught up with their family’s day-to-day needs and often never call the Network to update their phone numbers and addresses. Then, when an opportunity becomes available that they might be good candidates for, we can’t find them.
A disproportionate number of HPS families face huge socio-economic barriers. Families that often struggle to pay the rent every month tend to move more frequently. Families that have a wage earner who is legally blind and cannot drive tend to move a little more often. If you can drive, and whether by choice or necessity, you find another job in the same city, you might never think about moving. If, however, you can’t drive and you are dependent on public transit or paratransit systems which often are operated by counties and don’t serve entire metropolitan areas – a job change of even just a few miles can require moving the family so the HPS’er can get to and from work.
Sometimes we never know the reasons why.
One case that has haunted me lately is the story of Victor. (Victor is not his real name, but we’ll call him Victor.) Victor never knew he had HPS until he was diagnosed with pulmonary fibrosis. Actually, he was originally diagnosed with idiopathic pulmonary fibrosis, and I’m not certain how he came to figure out he really had HPS. At any rate, Victor’s lungs deteriorated at a rapid pace. Sometimes HPS’ers lungs deteriorate very slowly over years. But for some reason, Victor’s had gone down hill very quickly in the matter of only about two years. By the time he put it all together and contacted the Network, he was too sick to qualify for the Pirfenidone trial.
Victor went to great lengths to protect his wife and children. He didn’t want them to worry. As a result, I never got to speak with his wife. He decided to try for a transplant, but had run into all the obstacles and challenges that process offers up to HPS’ers. I tried to help, offering up our transplant success stories and sending journal articles about them to his doctor.
I tried to stay in fairly regular touch with him, but it wasn’t easy. For starters, I had to call him only during certain times of the day because he didn’t want to talk about HPS where his family could hear. Sometimes I’d call him and he’d sob on the phone. He was distraught and overwhelmed by his situation. Other times I’d call him and he’d be very distant. He had it all under control. There was nothing to worry about. The Network had offered all we could, which to his mind wasn’t much, and he was going to handle it on his own. Every time I’d call I never knew which Victor I was going to get – the guy that really wanted someone outside of his situation to talk to, or the guy that saw me as just another trapping of his illness and really preferred I’d just go away.
If I’d ever been sure which Victor was the “real Victor” I might have called more, or stopped calling altogether. I never really knew what I should do.
Then this winter the multi drug trial for late stage pulmonary fibrosis became an option. The first person I thought of when I heard about it was Victor. I hadn’t called him in a while because I got busy with the holidays, and because I was worried about whether he really wanted to hear from me. But now I had some news. I had something for him to check out at least.
I called, but none of his phone numbers worked. I sent a letter to his last known address, but it came back undeliverable.
I have no idea if Victor passed away, or if his medical issues took a toll on the family and they had to move. As far as I know, Victor – if he’s still out there – has no idea about the multi-drug trial.
Obviously I never went to a doctor’s appointment with Victor. We live thousands of miles apart. But, I suspect he was the same way with his doctors. You’d think that facing a life threatening illness, you’d do whatever you have to do to beat it. But life gets so much more complicated than that.
And, of course, just like the film presents we also face our own cultural issues. More on that later though. I’m really super tired tonight.
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