A medical student with mysterious symptoms that mimic the signs of kidney failure. A man with debilitating pain that has lasted for over a decade and causes temporary paralysis. A young woman who gained 90 pounds in a year and started experiencing severe pain and gastrointestinal problems.
All of the patients say their doctors haven’t been able to figure out what, exactly, is wrong. And they’re all hoping that a hive mind of television viewers might be able to help. The patients will be featured on “Chasing the Cure,” a new weekly show debuting this week on TNT and TBS that digs into undiagnosed or uncured medical conditions. Led by veteran journalist Ann Curry, the live show will tap into a panel of doctors and take suggestions from viewers about possible diagnoses. “Chasing the Cure” has also created an online community and a Facebook group, where hundreds of people have already shared their own medical mysteries in hopes that other users might be able to help.
But for a show that’s looking for answers, “Chasing the Cure” also raises a number of ethical questions, from how the show will make sure patients understand the implications of sharing medical information on live television to how the producers will proceed when a participant can’t afford care. STAT spoke with Curry about those considerations and what she sees as the value of crowdsourced care. This conversation has been lightly edited and condensed.
Why did you want to get involved with this effort?
When I was first presented the idea, my first reaction was concern. I was asking how do you do this ethically? How do you do this responsibly? How do you do this not just in a way that feels like a TV show, but actually treats these patients with tremendous respect and care?
It’s always been true that not everybody can get the diagnosis that they need. It’s always been true that not everyone can get the right health care that they need. But what’s happened is that social media has allowed these realities to bubble to the surface. And we’re seeing it’s not a small problem, but a significant problem.
I have held everyone to this promise [to proceed ethically] every step of the way. That is the only way that I would be involved, is if we put the patient first. And that’s a period on the end of that statement. That meant that [for] all the decisions we make — who we we find as doctors, how we treat the patients, whether we wait at all to give them a diagnosis or data on their care or whatever it is, the legal questions involved, all of those things.
I’ve tried for more than 30 years as a journalist to give voice to the voiceless. … These are people who are appealing on social media because they need to be heard because they’re alone. They’re suffering, and they need help, and they’re reaching to the crowd.
Tell me about a time when you pushed the team to put patients first.
One of the first people we brought into the team is a medical ethicist to help us guide our decisions. We have a psychologist, a social worker, and other behind-the-scenes doctors. Plus we reached out to major medical centers so we can make relationships and talk to them about what we’re doing [so that] we can be connected with them and have access to their specialists. We are connected now to 52,000 physicians who we might be able to call upon to help us solve these cases. In addition, we have sought some of the most talented minds in medicine. There’s tons of talented minds in medicine. The problem is that a majority of Americans really don’t have access to them.
So this idea was OK, well, what happens if you take people who are reaching out for help and give them a chance to sit in front of a panel of highly qualified, talented, great minds and you let them have their cases studied, let them be heard? And then on top of that, you expose them to the crowd.
Now, this is the part that some doctors have a problem with, because [they think] the crowd is not going to solve the case. … But that’s not the issue. The issue is there are people out there who have experienced some of these same symptoms, or their mothers have experienced exactly the same symptoms, or they are nurses or doctors or EMTs. And they may know something. If you know nothing, and you’re desperate for answers, your chance of finding out what you may need to know is much better if you are connected than if you’re not. That’s just basic math, right? That’s just two plus two equals four.
We’ve talked about the responsibilities you have to patients who are coming on the show. What responsibilities do you have to viewers in relaying health information?
We live in a time of rampant over-self-diagnosing. We’re living in a time when everyone thinks that they’ve got the worst disease possible because we are constantly trying to guard against the possibility that we’re extremely sick. Why are people turning to WebMD? Why? Because they don’t have time with their doctors. So this is a snowball rolling downhill. You can’t make fun of the other patients trying to get more information to stay well and have a long life, if they can’t get this information from the people they trust and who should be able to have time with them.
So I totally understand why doctors are rolling their eyes and throwing up their hands when a patient comes in and says, “Are you sure that I don’t have some 20-letter Latin phrase that is some kind of disease?” But this is actually an outgrowth [of] a need, and that need is real. And it has to be addressed.
We are completely aware that we have to be careful about making sure that no information is shared that is incorrect. I’m a journalist, the showrunner is a journalist. But every major decision … is manned by a doctor. Doctors have huge influence on what data we put out on TV. … I am not going to allow any information on TV that is going to hurt people. So I will be extra cautious about that, because that’s my responsibility.
[On the online platform] we will allow interaction and we want to encourage it, because we want them to not feel alone. But we’re also going to have that monitored by a human being and with auto-monitoring. Clearly, there are some risks.
I spoke to some bioethicists about the idea behind the show. And one question they asked was what it takes to make sure people fully comprehend what it means to share their medical information with the world in some way.
Especially when they’re desperate, right? Do they understand what that means? We’re trying to guard against that. And we’re doing it in big ways and small ways. We’re having real conversations. We’re having them look at medical and legal documents looking at the risks. … We can only do our due diligence.
In addition to being the executive producer and trying to be a firm voice in defending these patients, I feel I am a patient advocate. So, for example, the studio where we’ll be broadcasting from actually has a doctor’s office in it [that] can be used for examinations, even for blood draws and things like that.
What does television want? Television wants to show that examination. And what am I gonna say? “Are you sure? Would you like to have that done in private? Are you OK about showing this in public?” … Sick people want other people to not be sick like they are. They want to rescue other people. … [They] want them to know they’re not alone. … So it’s interesting how people think through this stuff and what decisions they make. … We can’t judge that. But what we can do is listen and to really make sure they understand, as best as we can, what is happening.
We are trying very hard to recognize the human dignity of all people. And we’re also not trying to replace their primary care physician. These doctors are advisers. They’re trying to help [participants] get closer to getting the data they need. In some cases, to be honest with you, it’s very possible that some of these patients will not even have a primary care physician, because we’re also hearing cases from the underserved. We’ve had to sort of be very tender-footed, trying to walk through this minefield, trying to make sure that we don’t overpromise, but that we do as much as we can.
I imagine one of those mines would be what happens when you encounter patients who either don’t have good health insurance, any health insurance, or can’t afford to chase down the possible diagnoses they’re given on the show.
Exactly. We’ve had to face that question directly. And certainly, this project can’t afford to pay for the medical care for all the patients who are going to be involved. … We’ve had people, doctors already offering to donate and care for these patients who can’t afford it. So even though we can’t pay for all the medical care for all the patients, what we can do is have their stories heard by a broader audience and make them not be alone or feel alone. And when they’re not alone, there’s a greater chance that good things might happen. So I think it’s fair to say that some patients will be getting care that they can’t afford.
My name is Paddy, I got an upper respiratory virus about 6 years ago. It lasted for 6 months. The first two months were the worst. I got rushed to the ER at the end of the first two months, because I continually coughed so hard for two months, that my airways and throat had swollen up and I could barely breathe. I made like a 90% recovery, but it still lasted for four more months before I could shake that last 10%. Ever since that, my throat swells up very easily in forced hot air, slightly dusty situations, with perfumes, etc. I have been to many doctors in Boston, Mass General included and nobody can give me an answer. I’ve seen a total of 10 doctors – allergists, ear nose and throat, and pulmonary specialists. It has destroyed my quality of life. Everywhere I go I suffer. Please let me know if you can help me.
My name is Christine McDonald and my son Joey(29) had two back to back accidents about a year and a half ago. One one a motorcycle and one one a four wheeler. Since then he has been in extreme pain in his shoulders and upper back k. We have been to three orthopedic specialists and surgeons with no results but physical therapy and two epidurals. Two neurologists and a rheumatologist. Again, no results but ended up in the hospital from all the drugs these doctors were pumping in me. Not to mention the hospitals that he is constantly in for testing.He also developed ulcers. I He has had two scopes done and again more meds. given. The second scope found that the ulcers are supposedly gone, but he can’t keep even water down. The doctors in the hospitals tell him that he is extremely dehydrated. He is extremely frustrated and worried and so am I
He can’t sleep and getting weaker by the day. If there is any thing you do for my son, I would really appreciate it. Thank you.
How is one considered to be chosen to be worked on from the experts on this show. My doctor told me yesterday “there is something wrong with you, but you haven’t found a doctor who can put all the pieces into place.” This has been a 40 year journey.
Thank you for your time.
Hi my name is Mike, for the past year and some, I have been fighting dry heaves, massive headaches at the temples that can curl me up in a ball. Stabbing pain in my left side of my chest. Shortness of breath and fatigue. This also effects my moods. I have seen cancer Dr, cardiologist, endocrinologist, neurologist, rheumatologist, with answer. I feel like a ping pong ball being bounced from one specialist to another. Please help me!!!
I have a neighbor, age 66, who has been diagnosed with Kennedy’s disease. From a year ago, going to the gym every, day feeling good, to being in a wheel chair and/or walker at all the times. I understand this is an incurable disease. With all the new gene therapy studies I was hoping to find out if there is anything new on this disease.
I am going thru some bizarre medical issues myself, at the moment. I have videos, pictures, and write down Everytime a sign or symptom changes. I’ve been to numerous doctor’s and not one of them can seem to find what is the cause of all these strange things that are happening to me. My husband advised me that there is help out there even on television. I’m sure what is going on with me will help bring your rates up. But, my main concern is finding out what is wrong before whatever it is gets worse and/or Kills me. I’ll be more than happy to share more of my information in further detail with someone once they reply. But just emailing them at this moment is too personal. So, you’re more than welcome to contact me at your earliest convenience on my mobile phone. (315)898-3163 as well as my email [email protected]. I’m really looking forward to your reply and I thank you for your time,
PS. This all began after exposure to tics..
I have been struggling for almost a year now with an unknown autoimmune disorder..I have seen rhuematologist,urologist,gastroenterologist,had 2colonoscopies,upper endoscopy,I see my primary every2weeks along with my regular eye dr bi-weekly…I have been seeing an opthamologist every month because I hv scleritis,which goes with a handful of autoimmune disorders…nobody can figure out what is wrong w me…I hv gained 70lbs since April and they jst keep me on prednisone….which again,since April…I am in pain and constantly hv more symptoms arise…I am frustrated and irritated all the time…I cannot work and am working on disability,but do not have a clear diagnosis..please help.
My wife is going through the same issues. Her diagnosis has been changed time and time again. It breaks my heart to watch her and many others struggle with these autoimmune disorders. She is in pain every minute of every day. She is unable to work and this along with the pain brings depression and helplessness. We have no insurance now and this adds to our distress. Over the last 7 years I feel she has been a guinea pig. Medications prescribed and changed repeatedly. None helping a lot of them making her worse and some sending her to the emergency room. I am desperate to help her. I’m so sorry you’re going through this. You are not alone.
I have had 12 cholesteatoma surgeries and it keeps combing back. I have been to Mayo Clinic usc i have tried everything and no one can find a cure or why it keeps coming back. It had spread to my salivary gland and face i truly need a medical miracle
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