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AlwaysScience
Chatty Member
Chris/Chrustopher Sturm is a Wisconsin photograher on YouTube and Instagram who announced he has cancer on March 19, 2024. He recently said tests show he has lung cancer with mets to his brain. He has started a GoFundMe as he evidently did not have medical insurance when he had a seizure and was treated in the emergency department (called A&E in the UK) of a Wisconsin hospital.
Several commenters to his latest YouTube video expressed concern about his video in which he is driving because it is so soon after his seizure and he dismissed their concerns by claiming doctors told him he is safe to drive because he is on anti- seizure medication and steroids. But it isn’t clear if he legally can drive less than 90 days after a seizure under Wisconsin law.
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In his first comments on his GoFundMe page Sturm wrote this:
“It seems that even to get a diagnosis, I’m going to have to spend several hundred dollars out of pocket right from the get go. Doesn’t seem right.”
Sturm is in his late 30’s and I’m shocked that he doesn’t know that even with medical insurance, cancer testing and treatments in the US cost patients thousands, if not tens of thousands of dollars. US insurance typically only covers about 80% of medical costs - patients must pay 20% as “co pays.”
Former US gymnastics Olympian Mary Lou Retton was hospitalized for over a month in 2023 in the US with a dangerous respiratory infection and her GoFundMe raised over $400,000 for her medical costs, After she was released from the hospital she was asked why she did not have medical insurance and she claimed that she had been unable to afford it due to previous medical issues. This was criticized as an untrue statement because under the Affordable Care Act Americans can buy medical insurance despite any preexisting conditions, and their health is not a factor in the amount of the monthly premiums they must pay. Premiums under the ACA are based on age and where the person lives.
Several commenters to his latest YouTube video expressed concern about his video in which he is driving because it is so soon after his seizure and he dismissed their concerns by claiming doctors told him he is safe to drive because he is on anti- seizure medication and steroids. But it isn’t clear if he legally can drive less than 90 days after a seizure under Wisconsin law.
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In his first comments on his GoFundMe page Sturm wrote this:
“It seems that even to get a diagnosis, I’m going to have to spend several hundred dollars out of pocket right from the get go. Doesn’t seem right.”
Sturm is in his late 30’s and I’m shocked that he doesn’t know that even with medical insurance, cancer testing and treatments in the US cost patients thousands, if not tens of thousands of dollars. US insurance typically only covers about 80% of medical costs - patients must pay 20% as “co pays.”
Former US gymnastics Olympian Mary Lou Retton was hospitalized for over a month in 2023 in the US with a dangerous respiratory infection and her GoFundMe raised over $400,000 for her medical costs, After she was released from the hospital she was asked why she did not have medical insurance and she claimed that she had been unable to afford it due to previous medical issues. This was criticized as an untrue statement because under the Affordable Care Act Americans can buy medical insurance despite any preexisting conditions, and their health is not a factor in the amount of the monthly premiums they must pay. Premiums under the ACA are based on age and where the person lives.
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TryingMyBest
Chatty Member
Sadly I feel like he thinks he's going to be cured and live a long life. That is seldom the outcome with this type of cancer that has already spread to the brain and spine.
And now (well yesterday and it just timed out) - anyway, he's feeding a tiny baby with a bottle of formula on his instagram stories, captioned: "still fighting cancer, still paying thousands and thousands to do it [broken heart emoji]" - gofundme link - followed by several people e-begging on his behalf....
Like you put it so well, "His poor analytical thinking bothers me so much that I can’t watch his videos, but I do read the comments when he drops a new video"
I don't even care if I'm wrong - my skin is crawling and I think he's lying about driving, lying about getting the all-clear from his doctor that he can drive, lying that he bought the insurance from ACA and saw the doctor OR lying that he didn't and doesn't have insurance, lying about the insurance with this brand new job in California when he hasn't even gone to California yet.... Ewww ewww ewww. I think I'd rather watch Tiffany bullshit me than this manipulative crybaby self-centered irresponsible "stubborn" grifter jerk.
Like you put it so well, "His poor analytical thinking bothers me so much that I can’t watch his videos, but I do read the comments when he drops a new video"
I don't even care if I'm wrong - my skin is crawling and I think he's lying about driving, lying about getting the all-clear from his doctor that he can drive, lying that he bought the insurance from ACA and saw the doctor OR lying that he didn't and doesn't have insurance, lying about the insurance with this brand new job in California when he hasn't even gone to California yet.... Ewww ewww ewww. I think I'd rather watch Tiffany bullshit me than this manipulative crybaby self-centered irresponsible "stubborn" grifter jerk.
Chris posted a photo on Reddit of Jason Lee taken at Lee's new camera shop, Eagle Rock Camera in Dec when he met him. (confession: I had to search Jason Lee because I couldn't remember who he was!) I assume the camera shop is the company that will provide his insurance but policies vary so much. Kyle had to change insurance companies so Jenny could get treated at COH and he worked for a large employer. Lee donated $1000 to GFM 16 days ago.
He again replied to a driving comment that he will defer to his medical team but someone did post " Christopher you need to talk to an attorney. it is my understanding that the Wisconsin law of 90 days of no driving after a seizure cannot be waived based on recommendations of a neurologist or oncologist without a written request being made to the Wisconsin DMV/DOT using the Medical Examination Report." Somehow I don't think he'll pay attention to that but he'll definitely never film in the car again.
He again replied to a driving comment that he will defer to his medical team but someone did post " Christopher you need to talk to an attorney. it is my understanding that the Wisconsin law of 90 days of no driving after a seizure cannot be waived based on recommendations of a neurologist or oncologist without a written request being made to the Wisconsin DMV/DOT using the Medical Examination Report." Somehow I don't think he'll pay attention to that but he'll definitely never film in the car again.
Bassethoundmama
Active member
I am so incredibly sorry to hear that, only 25 years old and so much life ahead of him.
The Photo Dept (Chris) and I are similar in age (I'm 36) and I don't understand how he doesn't see it's wrong to drive and risk other people's safety. He seems childish and very, "me, me, me". Maybe I'm naive but I don't see his doctor just saying, "sure you're good to drive". There's a reason why there is a 90 period after a seizure to drive again. I believe at least Florida and Georgia have a 6 month period. But this guy didn't even wait 2 weeks? 3 at most
AlwaysScience
Chatty Member
Yes Elpis, there are just too many things that don’t make sense. There is duplicity here.
AlwaysScience
Chatty Member
I think the reason Chris claimed he had bought insurance on the exchange is that he assumed he could sign up for insurance under the ACA at any time, and was surprised later when he received notice of rejection of his application. The sign up process online is actually an application. During the annual open enrollment period no one can be rejected so I think people confuse what they are doing as enrolling, when technically they are applying.
I agree about Tattle Life performing an important service. It is not journalism, but it does serve a similar function. No government can be held accountable to citizens without a free press to question what the government claims. Tattle Life appears to be the only way that claims of cancer bloggers who are asking for money on YouTube can be easily discussed and challenged. People can create channels to criticize cancer bloggers but many of us do not have the know,edge for that.
If YouTube cancer bloggers did not delete comments that questioned their claims then the discussions found on Tattle Life could be found on YouTube. I would actually prefer that as the questions and replies from the cancer bloggers could be easily found by anyone with concerns about the bloggers’ credibility. Accountability is a good thing.
Tattle Life can be used for unfair and even hostile comments. But I don’t own it and no one has offered to hire me as a moderator so that is something I cannot do anything about. I use Tattle Life in the way that I think is honest and fair. I appreciate the other users here who use it the same way.
Welcome to anyone new who has found Tattle Life because of Chris sharing it and who has decided to create an account to engage in discussions we can’t have in the comments section of YouTube. Please be honest, fair and kind here.
AlwaysScience
Chatty Member
I don’t think he is as susceptible to magical thinking as TiffanyThinks is, but I do get the impression that he is not very good at realistic assessment of life situations. His driving so soon after his seizure is just one of his behaviors that lead me to think this. He also has said that he had not been a “heavy“ smoker, as if that would make him unlikely to get lung cancer. The ultimate lack of adequate risk assessment was the fact that he was in his late 30’s and did not choose to buy medical insurance until he got cancer.
Any of us living in the US could be in a serious car accident or a mass shooting and run up hundreds of thousands of dollars in medical bills. There are news reports of people in the US whose medical bills for cancer or trauma exceed one million dollars. You can file bankruptcy here to get the medical bills wiped out, but high quality rehabilitation hospitals are not available to uninsured people who do not have a lot of money. It’s not wise to be uninsured in the US unless you are a millionaire and wiling to let most of your net worth get wiped out by medical expenses.
His poor analytical thinking bothers me so much that I can’t watch his videos, but I do read the comments when he drops a new video. And I hope that treatment gives him more than a few more months of life that is enjoyable. It would be great if he picks up a lot of followers on YouTube so that he can make money from that, and not rely as much on donations. I would prefer to see financially able and kindhearted people donating for the expenses of people who have not willfully foregone medical insurance.
When my Dad had brain cancer, (glioblastoma) the oncologist painted a picture that my Dad could survive, that they could get rid of the tumor with radiation, and it wouldn’t grow back for 2 years. My Dad wound up bedbound. We were able to get him to his follow-up MRI. The oncologist said the tumor had shrunk drastically! But Dad was sitting in a wheelchair, could hardly speak, and in bad shape all around. That doctor never once said it was terminal. Dad passed away 5 months after that appointment.
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It’s the same way in my state of Maryland.
I think what he means by state insurance is Medicaid but he might have too many assets even if he isn't working now.
I'm confused about this. His new job is working for Jason Lee at his camera shop in CA. Why would he be getting a salary now if he isn't actually working in CA? They just met in Dec so did Lee put him/keep him on the payroll just so he could get medical insurance? I don't think he's getting that new insurance policy otherwise he wouldn't be pushing to get state insurance. Lee did give $1000 to his GFM.
I'm confused about this. His new job is working for Jason Lee at his camera shop in CA. Why would he be getting a salary now if he isn't actually working in CA? They just met in Dec so did Lee put him/keep him on the payroll just so he could get medical insurance? I don't think he's getting that new insurance policy otherwise he wouldn't be pushing to get state insurance. Lee did give $1000 to his GFM.
He posted today on IG that he has started on a pill, Tagrisso (step 1 in a 2 pronged attack). It costs $20,000 a month but his first month is free due to a donation at the pharmacy. It sounds like he wasn't able to get ACA insurance as someone posted earlier because he was out of the sign up period because he is hoping to get insurance straightened out so he won't have to pay that amount every month.
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We posted at the same time!
mayday mayday
Chatty Member
I'm not sure if I'm supposed to say Trigger Warning first but I want to now say why I took an immediate dislike to this guy. I see this moron speeding down a highway while calmly discussing his potentially lethal disease. A few seconds with eyes off the road ... well we know what can happen. On Easter morning my son's GF's brother was killed in a single vehicle accident. He was coming home and was still out of state when it happened. He was only 25 years old and had so many plans for his future. He already owned 2 acres of property where he was planning to live kind of "off the grid". For whatever reason he ran off a two lane road in the middle of nowhere and the family will probably never know why. Then I see Mr. Photo Guy running his mouth while driving, at one point he's on a highway speeding merrily along. Just so wrong.
AlwaysScience
Chatty Member
Yeah the stereotype of Asian women is that they are very deferential to men. However, one of my friends is a Korean. Her parents moved to the US when she was 3. Initially they lived in neighborhoods with other Korean immigrants. But they pushed their 2 daughters to do well in school and go to Ivy League colleges. My friend did that, then went to a state law school and is now a partner in her law firm.
So she is a professional women who makes a lot of money, and has a husband and 2 kids. She does not defer to men.
TryingMyBest
Chatty Member
Not that it really matters but I think she is maybe Asia/Southeastern Asian.
AlwaysScience
Chatty Member
I have no idea what he is talking about re Medicare/Medicaid. In that state you can’t get Medicare unless your monthly household income is under about $1,700/month according to the table I looked at. I’m certain his girlfriend makes more than that as a nurse. Since he doesn’t seem to be working right now I guess he could rent a cheap apartment and claim to live there but that would be Medicare fraud. Getting Medicaid due to disability would take months because he would have to prove that he is disabled.
The takeaway here is that in the US if you don’t have medical insurance through an employer, you better buy insurance under the ACA during an annual open enrollment period.
A lot of Americans file bankruptcy due to medical bills they can’t pay even though they do have insurance. A 20% copay on hundreds of thousands of dollars in medical bills due to ICU care or cancer treatment is more than a lot of people can afford.
The takeaway here is that in the US if you don’t have medical insurance through an employer, you better buy insurance under the ACA during an annual open enrollment period.
A lot of Americans file bankruptcy due to medical bills they can’t pay even though they do have insurance. A 20% copay on hundreds of thousands of dollars in medical bills due to ICU care or cancer treatment is more than a lot of people can afford.
AlwaysScience
Chatty Member
Yeah doctors don’t just write a scrip for anti seizure meds and send you on your way. The dosage of those meds has to be adjusted so that it is high enough to prevent seizures but not any higher than necessary due to side effects.
Since he mentions a ”marketplace” through which he has bought insurance I think it is via the Affordable Care Act. He purchased it after the end of the annual Open Enrollment Period. Unless he had a qualifying event then he isn’t eligible to buy insurance outside of the annual open enrollment period.
So if he made up a “qualifying event” when he applied and the insurance company suddenly starts getting tens of thousands of dollars in claims for tests and cancer treatments like the gamma knife, they may investigate to confirm he had a qualifying event. His claims over the next 12 months or however long he lives are going to be much higher than the insurance premiums he pays, and insurance companies do not like to lose money if they can find any way to avoid it.
I think he is going to need every penny of GoFundMe money he can get. The fact that he initially was worried and upset about how getting testing to nail down the diagnosis would cost him “hundreds” of dollars out of pocket tells me he has somehow gone through about 38 years living in the US without ever learning how financially devastating the cost of cancer treatment is here.
Since he mentions a ”marketplace” through which he has bought insurance I think it is via the Affordable Care Act. He purchased it after the end of the annual Open Enrollment Period. Unless he had a qualifying event then he isn’t eligible to buy insurance outside of the annual open enrollment period.
So if he made up a “qualifying event” when he applied and the insurance company suddenly starts getting tens of thousands of dollars in claims for tests and cancer treatments like the gamma knife, they may investigate to confirm he had a qualifying event. His claims over the next 12 months or however long he lives are going to be much higher than the insurance premiums he pays, and insurance companies do not like to lose money if they can find any way to avoid it.
I think he is going to need every penny of GoFundMe money he can get. The fact that he initially was worried and upset about how getting testing to nail down the diagnosis would cost him “hundreds” of dollars out of pocket tells me he has somehow gone through about 38 years living in the US without ever learning how financially devastating the cost of cancer treatment is here.
I don't know if he feels, and commenters think, that he will be completely cured. I thought it's interesting that his girlfriend is a nurse who works with cancer patients. I certainly hope that he does well and I'll continue to watch his vlogs to see his progress.
I found this information and I'm sure that new treatments are popping up so who knows what will happen.
"Further research from 2020 involved reviewing clinical information for people with EGFR mutation lung adenocarcinoma that had spread to the brain. Researchers found that following treatment with EGFR inhibitors, the survival rates for people with EGFR mutation lung adenocarcinoma were:
I found this information and I'm sure that new treatments are popping up so who knows what will happen.
"Further research from 2020 involved reviewing clinical information for people with EGFR mutation lung adenocarcinoma that had spread to the brain. Researchers found that following treatment with EGFR inhibitors, the survival rates for people with EGFR mutation lung adenocarcinoma were:
- 95.6% after a year
- 74% after 2 years
AlwaysScience
Chatty Member
Found an excellent January 2024 article on progression free survival rates and overall survival rates when radiation is done on the brain mets immediately (versus later, after other treatments). Looks like between 2 and 3 years is median survival for NSCLC with brain mets that is EGFR positive when the radiation is done first.
Link: https://bmccancer.biomedcentral.com/articles/10.1186/s12885-024-11868-9
If the link above gets removed, here is the title of the article “Analysis of the Efficacy of Upfront Brain Radiotherapy Versus Deferred Radiotherapy for EGFR/ALK-Positive Non-Small Cell Lung Cancer With Brain Metastases: a Retrospective Study”
Fyi note the word “efficacy.” Whenever you want to research the effectiveness of a medical treatment, use the word “efficacy” in your search - not “effectiveness.”
Link: https://bmccancer.biomedcentral.com/articles/10.1186/s12885-024-11868-9
If the link above gets removed, here is the title of the article “Analysis of the Efficacy of Upfront Brain Radiotherapy Versus Deferred Radiotherapy for EGFR/ALK-Positive Non-Small Cell Lung Cancer With Brain Metastases: a Retrospective Study”
Fyi note the word “efficacy.” Whenever you want to research the effectiveness of a medical treatment, use the word “efficacy” in your search - not “effectiveness.”
Make sense of it!
VIP Member
Hi Chris
You made Cancer and your personal life a "business" and that's when it became our business. That's just how this works
