I don't......feel like I have the right kind of empathy for this story. Navigating the clinical trials are a complete mess and it should and could be a lot better, but it's not there yet, I agree...
I don't......feel like I have the right kind of empathy for this story.
Navigating the clinical trials are a complete mess and it should and could be a lot better, but it's not there yet, I agree with the writer . That's not even about the efficacy of the trials themselves, just the navigation of them. They're highly educated, they have the connections, training and resources but it's still really really really hard for them
I hope Jake's trial works out and he gets many many years with Bess.
And in part 3 she also used the word "hopeium".
I wonder at what point, for me, I would just say, you know what, no, Imma just sit at the beach for the next few months and hang out until the end. Do nothing, spend no money medically. I'm throwing away the lottery ticket and taking a nap instead. Let's not spend nights screaming into pillows and weeping at the keyboard; let's visit long time friends instead and share one more meal, even if it's through a straw.
I'm not a doctor, Bess is. Maybe that much closer distance to the industry makes it feel like it makes less sense for them to give up than a cash poor layperson like myself.
I hope they have a wonderful update soon and that Bess does make a career move into this field to help many others.
As someone trying to get into clinical trials for my (lack of) diagnosis is frustrating to say the least. I'm disabled/sick, but not sick enough to qualify as a sick patient, but not healthy...
As someone trying to get into clinical trials for my (lack of) diagnosis is frustrating to say the least. I'm disabled/sick, but not sick enough to qualify as a sick patient, but not healthy enough to qualify as a healthy patient for the trials. It sucks.
My husband Jake is dying of recurrent / metastatic squamous cell carcinoma (R / M HNSCC), and he’s exhausted conventional treatments, so his only chance at survival is a miracle clinical trial drug. But what clinical trial might save him? How do we find it? Those are the question we’ve been trying to answer since learning on July 21 that he has eight new tumors in his neck and lungs. Finding the right clinical trial is literally a life, or more likely death, issue for Jake. Despite the stakes, from the patient’s perspective, the clinical trial process is impressively broken, obtuse and confusing, and one that I gather no one likes: patients don’t, their families don’t, hospitals and oncologists who run the clinical trials don’t, drug companies must not, and the people who die while waiting to get into a trial probably don’t. I guess the dead don’t have preferences, but I’m going to assume they’d rather be living. Per Judy Seward, head of clinical trial experience at Pfizer, only 8% of adult cancer patients take part in trials. Given our recent experience, I’m amazed it’s that many.
My heart goes out to them – what a horrible predicament. Here is to hoping that Jake Seliger can find a good clinical trial. p.s. I don't know if this is inappropriate to say (it's a bit off...
My heart goes out to them – what a horrible predicament. Here is to hoping that Jake Seliger can find a good clinical trial.
p.s.
I don't know if this is inappropriate to say (it's a bit off topic) but both Bess and Jake write really well.
Reaching a point in medical care where a clinical trial is the best option is heartbreaking, and I cannot imagine the desperation of effectively racing against the clock hoping to find a potential...
Reaching a point in medical care where a clinical trial is the best option is heartbreaking, and I cannot imagine the desperation of effectively racing against the clock hoping to find a potential cure. But as pointed out, clinical trials are not for the patients in them. They are for the patients after the trial. While a lot of the communication is difficult and can likely be improved, a lot of the frustrations that Bess had are just the nature of what clinical trials are, especially phase 1 trials which are a very fluid landscape. When the point of the trial is the collection of data the rules regulating inclusion need to be specific, and when trials are incredibly numerous of course researchers are not going to be aware of everything available at the neighbor hospitals. Bess’s entire world was wrapped up in finding a trial, it is an immense amount of work dedicated to the care of a single patient. For the PIs of the trials that is not their primary duty. They are overseeing the precise collection of very specific data. There is a massive degree of logistics that go into managing a clinical trial and it should not be compared to a business like finding the best dress.
I feel terrible for anyone who is in the position of having to rely on hope of a clinical trial. But I think that there is a bit of an unrealistic expectation about what they are. Trials are research phases. The vast vast majority will end with no promise and should not be expected to exist as treatment options.
Hmmm, I think reframing this could help. A clinical trial knows their requirements, and is actively seeking applicants. There's a known quantity of clinical trials currently ongoing and approved...
Hmmm, I think reframing this could help.
A clinical trial knows their requirements, and is actively seeking applicants. There's a known quantity of clinical trials currently ongoing and approved by the FDA, and ostensibly a database of such trials and requirements on their side.
On the other side, you have a person literally dying or in such dire medical straits that they are considering experimental studies as a compassion case. Compassion cases themselves require exhaustive processes to burn through known treatments to prove that they need this last resort before they and their practitioner can be considered.
Why is the onus on the side of those least able to navigate such conditions?
What I see is an absolute failing of the FDA to serve the citizens it works for. A solution was implemented that in no way serves the patients or clinics, and they both are being failed by the regulatory body in the perfect place to serve as an in-between to help both trials and patients meet their needs, but is funneling money to something that is obviously failing everyone.
Speaking as someone who works in healthcare data, the system is broken on all sides. Even within a health system data accessibility and visibility is abysmal, let alone as a patient.
I don't......feel like I have the right kind of empathy for this story.
Navigating the clinical trials are a complete mess and it should and could be a lot better, but it's not there yet, I agree with the writer . That's not even about the efficacy of the trials themselves, just the navigation of them. They're highly educated, they have the connections, training and resources but it's still really really really hard for them
I hope Jake's trial works out and he gets many many years with Bess.
And in part 3 she also used the word "hopeium".
I wonder at what point, for me, I would just say, you know what, no, Imma just sit at the beach for the next few months and hang out until the end. Do nothing, spend no money medically. I'm throwing away the lottery ticket and taking a nap instead. Let's not spend nights screaming into pillows and weeping at the keyboard; let's visit long time friends instead and share one more meal, even if it's through a straw.
I'm not a doctor, Bess is. Maybe that much closer distance to the industry makes it feel like it makes less sense for them to give up than a cash poor layperson like myself.
I hope they have a wonderful update soon and that Bess does make a career move into this field to help many others.
As someone trying to get into clinical trials for my (lack of) diagnosis is frustrating to say the least. I'm disabled/sick, but not sick enough to qualify as a sick patient, but not healthy enough to qualify as a healthy patient for the trials. It sucks.
From the article:
My heart goes out to them – what a horrible predicament. Here is to hoping that Jake Seliger can find a good clinical trial.
p.s.
I don't know if this is inappropriate to say (it's a bit off topic) but both Bess and Jake write really well.
Reaching a point in medical care where a clinical trial is the best option is heartbreaking, and I cannot imagine the desperation of effectively racing against the clock hoping to find a potential cure. But as pointed out, clinical trials are not for the patients in them. They are for the patients after the trial. While a lot of the communication is difficult and can likely be improved, a lot of the frustrations that Bess had are just the nature of what clinical trials are, especially phase 1 trials which are a very fluid landscape. When the point of the trial is the collection of data the rules regulating inclusion need to be specific, and when trials are incredibly numerous of course researchers are not going to be aware of everything available at the neighbor hospitals. Bess’s entire world was wrapped up in finding a trial, it is an immense amount of work dedicated to the care of a single patient. For the PIs of the trials that is not their primary duty. They are overseeing the precise collection of very specific data. There is a massive degree of logistics that go into managing a clinical trial and it should not be compared to a business like finding the best dress.
I feel terrible for anyone who is in the position of having to rely on hope of a clinical trial. But I think that there is a bit of an unrealistic expectation about what they are. Trials are research phases. The vast vast majority will end with no promise and should not be expected to exist as treatment options.
Hmmm, I think reframing this could help.
A clinical trial knows their requirements, and is actively seeking applicants. There's a known quantity of clinical trials currently ongoing and approved by the FDA, and ostensibly a database of such trials and requirements on their side.
On the other side, you have a person literally dying or in such dire medical straits that they are considering experimental studies as a compassion case. Compassion cases themselves require exhaustive processes to burn through known treatments to prove that they need this last resort before they and their practitioner can be considered.
Why is the onus on the side of those least able to navigate such conditions?
What I see is an absolute failing of the FDA to serve the citizens it works for. A solution was implemented that in no way serves the patients or clinics, and they both are being failed by the regulatory body in the perfect place to serve as an in-between to help both trials and patients meet their needs, but is funneling money to something that is obviously failing everyone.
Speaking as someone who works in healthcare data, the system is broken on all sides. Even within a health system data accessibility and visibility is abysmal, let alone as a patient.