The Colon Club

http://www.foxnews.com/health/2018/05/3 ... rking.html

This is a recent article I read concerning the lack of (NHS) coverage for Avastin payments in the United Kingdom's, National Health Service... So much for "FREE healthcare."

When I read this article, and others like it, I thank my lucky stars for paying for my healthcare coverage in the U.S. I know this fight is not cheap for any family, but at least my insurance coverage in the U.S. allows my wife to continue to survive living with this disease, without bringing us into bankruptcy for the most updated and effective treatment plan. Clearly we have to budget the premiums, copays and deductibles; but we plan it as a known yearly expense.
...For this, I am forever so grateful!
WS

WarriorSpouse wrote:http://www.foxnews.com/health/2018/05/31/oncology-nurse-forced-to-fundraise-for-terminal-cancer-treatment-says-its-working.html

This is a recent article I read concerning the lack of (NHS) coverage for Avastin payments in the United Kingdom's, National Health Service... So much for "FREE healthcare."

When I read this article, and others like it, I thank my lucky stars for paying for my healthcare coverage in the U.S. I know this fight is not cheap for any family, but at least my insurance coverage in the U.S. allows my wife to continue to survive living with this disease, without bringing us into bankruptcy for the most updated and effective treatment plan. Clearly we have to budget the premiums, copays and deductibles; but we plan it as a known yearly expense.
...For this, I am forever so grateful!
WS

One of my previous project leaders worked in the UK and she explained the system there. There is National Healthcare and then you can pay an additional amount to get a higher level of service and coverage. So they have a two-tiered system. I think that this is analogous to Medicaid and corporate healthcare where the coverage levels can be vastly different. I understand that other countries with national healthcare systems have the same kind of two-tiered system.

The UK is going through a rough patch with Brexit as well and I suspect that it is causing labor problems. I do think that there are NHS budgetary issues unrelated to Brexit as well.

People don’t seem to realise we also have private medicine . Many people have insurance through work or privately arranged .
The NHS recently removed Avastin but kept two other biological agents . Scotland has kept three.
If a person wishes to add Avastin to their chemo they can fund it but pay for the NHS to administer it along side their chemo which will remain free.
To date as a retired citizen my mum has had one bowel , two liver and one lung resection ,some at specialist centres, and all her chemo funded with out paying a penny . Clinical trials are also free.
Our ethos is that all citizens should have equitable access to health care no matter who you are . We also treat visitors to our country through our Accident and emergency departments.
A homeless person will have the same treatment care as the Queen .
It comes at a price so our NICE committes and consortiums decide on evidence bases what treatment is achieving the best results .
There is always funding issues surrounding it for parliament to consider and heavily populated areas like London have more demand placed on it . However that is offset by Private medicine also being more available taking the pressure off the NHS .
To be honest we have been totally satisfied with the NHS and despite having the income see no need to seek private care.
You also have to factor in population size for individual countries .
As a point of interest my mum’s liver surgeon is also surgeon to the Queen !!! He works for the NHS . If it’s good enough for the Queen then it worked for us too
Take care everyone ,
Stu

Hi Warrior Spouse,
Hope all is well with you and your wife.
For a Canadian perspective....The public system in BC has paid for my Avastin and it seems will indefinately. My Oncologist is also planning to try me on Erbitux once he see's progression and that will be covered as well. I do notice that the Cancer Agency here appears stretched thin in terms of staff and equipment and cutting edge scanning and treatment technology is used more sparingly.

All in all I've been very glad of the system we have in Canada so far, although I won't rule out paying for treatment in the US down the road. I don't think anything can match the treatment options in the US if you have the insurance or money to pay for it.

Cheers
AT

stu wrote:People don’t seem to realise we also have private medicine . Many people have insurance through work or privately arranged .
The NHS recently removed Avastin but kept two other biological agents . Scotland has kept three....................As a point of interest my mum’s liver surgeon is also surgeon to the Queen !!! He works for the NHS . If it’s good enough for the Queen then it worked for us too
Take care everyone ,
Stu

Hi Stu,
Our system is similar (well of course it is based on the UK) and warts and all it does work well.
The one point that this topic identifies is that specialists who assist in managing the system (under elected boards) do make decisions about what drugs are subsidised.
And if I may boldly share drugs that are considered dangerous (Avastin ????? it is debatable) or have a bad name will be placed aside. I think wisely!

There shall always be some drugs-procedures that anyone may have access to BUT they must pay for.
There is no 'loss' in healthcare. But yes there is a small loss of personal choice.
What is not shared is that most medical insurance bodies do the same thing.
Is that bad?
This will be debated back and forth? Which is good as some medications-procedures need to be debated by the health care professionals.

A patient with metastatic breast cancer came to the trial after receiving multiple treatments, including several chemotherapy and hormonal treatments, that had not stopped her cancer from progressing. To treat her, the researchers sequenced DNA and RNA from one of her tumors, as well as normal tissue to see which mutations were unique to her cancer, and identified 62 different mutations in her tumor cells."

"The researchers then tested different TILs from the patient to find those that recognized one or more of these mutated proteins. TILs recognized four of the mutant proteins, and the TILs then were expanded and infused back into the patient. She was also given the checkpoint inhibitor pembrolizumab to prevent the possible inactivation of the infused T cells by factors in the tumor microenvironment. After the treatment, all of this patient's cancer disappeared and has not returned more than 22 months later.

https://medicalxpress.com/news/2018-06- ... ancer.html

We've already seen this with at least one of our forum members with Stage 4 CRC. Where else in the world could you get this treatment in the past two years? The NCI has a $5.7 billion budget and you can see their mission at https://www.cancer.gov/about-nci/overview

I only wish that they were available for Stage 3 patients before I started treatment.

I learn a lot from others on this forum. On this blog, I am learning much about the different healthcare systems helping prolong life and hopefully cure some along the way.

Nothing is free, and I get that taxes, VATs, premiums, copays and deductibles all play a role in funding this battle. Maybe it is best that each country is a little different because it can approach the problem, research, and treatment differently. Sometime these differences in funding lead to different results, successful treatment plans, and better data for all to learn from. I just feel bad that an oncology nurse got stuck in this NHS decision... I was not aware of people carrying private policies in the UK to supplement their care.

For the many that are on here discussing the process, I do very much appreciate the conversations. I have learned so much here and have been lucky enough to be financially prepared to keep up with it all. Many who have participated here have help me focus on specific care taker responsibilities and my wife has responded very well to her maintenance treatments. She is approaching her 4 year mark this fall.

Good health and thoughts to you all. Thanks for keeping the discussions moving.
WS

NHMike wrote:One of my previous project leaders worked in the UK and she explained the system there. There is National Healthcare and then you can pay an additional amount to get a higher level of service and coverage. So they have a two-tiered system. I think that this is analogous to Medicaid and corporate healthcare where the coverage levels can be vastly different. I understand that other countries with national healthcare systems have the same kind of two-tiered system.

Officially in Ontario you can't pay for health care services that theoretically speaking are available for free.
As a result we are getting an infamous "waiting times" problem.
According to propagandists from Ontario Healthcare Ministry we have a single tier system.
In reality people with better connections are getting preferential treatment.
It's a de-facto two-tier system that is organised slightly differently.

Utwo wrote:

NHMike wrote:One of my previous project leaders worked in the UK and she explained the system there. There is National Healthcare and then you can pay an additional amount to get a higher level of service and coverage. So they have a two-tiered system. I think that this is analogous to Medicaid and corporate healthcare where the coverage levels can be vastly different. I understand that other countries with national healthcare systems have the same kind of two-tiered system.

Officially in Ontario you can't pay for health care services that theoretically speaking are available for free.
As a result we are getting an infamous "waiting times" problem.
According to propagandists from Ontario Healthcare Ministry we have a single tier system.
In reality people with better connections are getting preferential treatment.
It's a de-facto two-tier system that is organised slightly differently.

Speaking of tiers:

Phillips House at Massachusetts General Hospital

What You’ll Pay: $434 per day

How Hard Is It to Get In?: 59 rooms

About That View…: Boston Harbor, Zakim and Longfellow bridges, Charles River

Creature Comforts: Mahogany doors and trim, a guest bed for visitors, tea in a lounge featuring an 18th-century English grandfather clock, complimentary massages.

Latest Renovation: 2007

On the Menu: Special requests are standard. Patients on liquid diets have been known to receive black-and-white frappes.

What Patients Say: “The people who came to visit me seemed stunned. My father-in-law kept going on and on, like it was where a Kennedy would be put.” —Jennifer Klahn, a nonprofit fundraiser who was moved to Phillips after a pregnancy complication.

Brigham and Women’s Shapiro Tower Pavilion

What You’ll Pay: $300–$800 per day

How Hard Is It to Get In?: 14 rooms

About That View: Jamaica Pond, the Emerald Necklace, the Esplanade

Creature Comforts: Private kitchenette, high-thread-count sheets, full-size tiled bath, spa-worthy terrycloth robes, pavilion concierge, concealed medical apparatuses.

Latest Renovation: 2012

On the Menu: A dedicated chef prepares delicacies like crab cakes and lobster ravioli, served on fine china atop white-linen tablecloths with freshly snipped flowers.

What Patients Say: “It’s almost like you’re not in a hospital. It’s like you’re in a hotel room. It’s an enormous suite.” —Sandro Roffo, who had a kidney removed at Shapiro, and who compares his in-room meals to “room service coming from a five-star chef.”

https://www.bostonmagazine.com/health/2 ... amenities/

My former manager stayed at the Shapiro Tower Pavilion when his wife had a procedure done last year.

Ha , we can not compete with that Mike . Rooms are actually nice here as we have a few new hospitals but I secretly think the food is part of the early discharge programme . It’s so bad patients are doing everything in their power to get home !!!
WarriorSpouse , you are so correct in that we learn so much here . It was listening to patients that helped me see what was useful to my mum .
Interestingly I was trained by the NHS but went on to work in a community setting . It was funded by local government and not central government and it was so underfunded it was a nightmare to work in . Patients were stressed and not coping and I frequently got the brunt of it . So I guess even within a country some aspects of health care work better than others .
Where I notice the difference between the US and the UK is the use of chemo. Our oncologists have never given my mum post op chemo. I believe you would have considerably more . Her lung met was slow growing so again no chemo as thebresearch indicates it’s more effective on fast growing tumours . So incredibley my mum has only ever had 12 cycles of chemo to manage a stage 4 diagnosis over nine years !!! I think that’s the main difference . It use to worry me but not so much now . She is much older that your wife so quality is a factor .
I am delighted your wife is doing so well . Whilst appreciating our system I also lobby our political leaders for more options as you may just be the person that requires it and it would work for . However I know they will draw lines . That’s why good research is so important in our country . To allow the evidence to speak .
Nice discussion going on here.
Stu

NH Mike, great statistics of Boston's healthcare luxury:)
Maybe Mass General Hospital is better option than Dana Farber after all...haha!

Stu, I bring it up here domestically (USA) because many here advocate "FREE" stuff in the States. Healthcare, College / University, and for some housing... All of this stuff costs money, so I know that nothing is actually "FREE."

Achilles Torn, I am glad to see you here and doing well. Especially glad that your care is complete and adequate according to current practices.

I guess the better argument is investment in research and affordable healthcare risk pools. The actuaries get life, car, and house insurance right. Why they can not get healthcare numbers more accurate is the real enigma. There are many factors why healthcare is a more difficult nut to crack. It should be the first thing we all pay for before buying a beer or meals out, that's for sure.

I have multiple layers of healthcare protections for my family, but I also pay for them and consider them as important as my house, vehicle maintenance schedules, and kids tuition cost. I always pay for the big stuff first and then live the life my income can afford after that. Sometimes we go on weekend trips instead of long holidays / vacations. That is ok with me.

We get more peace of mind out of living within our means than I can describe in one blog post. Although the cancer diagnosis has thrown a big hurdle in our family, and our finances, I can say that my wife is living a very purposeful life with many friends and our kids active involvement in all that is good in life. I think she lives life with more purpose now than before she was diagnosed. So in some ways, she has maximized her life in many aspects. It has been an example for me to witness and learn from. She is doing and living great! Thank you Dana Farber and all those who are part of her care.

All the best to everyone from my favorite allied countries, who helped saved the world once before. Let's do it again with colon cancer. "I'll see you on the beach!...Keep moving forward!" -Saving Private Ryan

Always Remember: June 6, 1944, D-Day.
WS

Brilliant . We shall push forward for sure
Take care,
Stu

Interesting Article and I still don't get the whole insurance thing in the US. Seems to put people in a position where those that have jobs are forced to decide the level of insurance coverage that you want to pay for. In Australia where I was diagnosed and treated I paid for my treatment.
Colon resection = Zip, Nada, not a thing. Covered for by my private health insurance and I had a private single room, in the private section of the hospital.
Lung resection = $40,000 but I paid that myself as I wanted the head surgeon with the best reputation. If I went private I would have got his assistant and he had done only less than 50 VATS as compared to the head bloke that had done something like 900.
Chemo = I had to pay a prescription fee for the pharmacy in the hospital to issue the FOLFOX drugs to the hospital which was like $38.50 every 2nd week.

In Australia we have "medicare". This is a publicly funded health scheme that is levied on your taxable income on a floating scale as per below.
https://www.ato.gov.au/Individuals/Medi ... surcharge/
The more you earn the more you pay.
I don't begrudge paying as I know it means that the next poor person that gets cancer will get some benefit from my taxes.

I just can't believe the cost in the US.

We regulate how much the surgeons can charge, how much the medical companies can charge to get patients for medicine on the publicly funded scheme. That is why we have free medical costs (well, free up front as someone else's taxes are paying for it)

No doubt the American retail prices appears high in both billing and here online. NH Mike is referencing the life of the sick, rich and famous. Most here will not seek this type of personal care; but in the American system, you can pay for all of the extras and opulence your money can buy! This is with everything in life from, cars, food, housing, university, and yes medical care too! god bless them. It does include a high mark up, but the revenue does help fund the rest of the hospital and the programs they run and support for the rest of us in America.

I have a family of four and pay about $12,000 per year on our healthcare. It may be a bit more with deductibles for the kids, but my wife's coverage, which is very good and supported by one of the best Cancer Center's in the American northeast, Dana Farber, it cost us around a $1,000 per month among premiums, deductibles, and copays. All very much worth it for the tens of thousands of dollars in care she has received.

We consider ourselves very fortunate to be living close to such wonderful care, and blessed for having the access to employment that helps fund such good care.
WS

WarriorSpouse, you should be thanking your lucky stars that you are amongst the lucky ones in the US who HAVE insurance, and that you CAN afford it. Medical bankruptcies affect many.

For 12 years, we had a catastrophic policy that cost $400 per month with a $15K per year deductible PER PERSON. We could barely scrape up the money for that. My cancer would have bankrupted us.

The complacency of those who have never had to face being under- or un-insured simply enrages me.

BTW, the UK has FAR, FAR better medical outcomes for FAR less money than our vaunted US system.