Avastin in UK's NHS vs. USA Healthcare

[NHMike]

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.

“For more than 10 years, Massachusetts has been a leader in providing access to health care coverage to everyone,” Massachusetts secretary of health and human services Marylou Sudders said in a statement. “We are pleased that today’s data from the US Census reinforces our success, and serves as a reminder that coverage is a very good platform to tackle the issues of health care affordability.”

https://www.bostonglobe.com/business/20 ... story.html

Healthcare isn't free in any country. You pay for it one way or another. MA is probably the best in universal coverage in the United States starting their program before the Affordable Care Act. They also have a way-above-average concentration of very good to excellent hospitals. The cost-of-living is high, though, for all of the social services provided.

If the US healthcare system didn't subsidize pharma and and other research and innovation, the rest of the world would likely suffer.

[rp1954]

The place where both USA and UK systems have failed is with respect to off label and generic drugs, and oncology supplements. In the US, UFT was never even available.

Basically, early use of cimetidine for CA199+CSLEX1 positive tissues (~65% of stage 3 and 4 at dx?) or celecoxib for stage 4 started at low residual loads after surgery +- supplements could save tons of money if targeted correctly, and yield better OS with better quality of life, based on some studies. Without a walletectomy.

[WarriorSpouse]

Boxhill,

I am sorry if my gratitude upset you. I posted the article, because I felt that the oncologist in the UK was not getting the treatment she deserves or would qualify for here in the States, based on a cost benefit analysis that did not help her.

As for your current position with insurance. Have you applied for Social Security Disability for Medicare coverage or looked into your State's Medicaid program?

Those are two options that you may get some relief, from your high premiums and deductibles. Also, I have met many friends in similar circumstances as ours and have seen the supporting spouse obtain employment at a local university where even part time employees can get decent healthcare benefits for their families. If this type of work is close by, it is worth a look too.

I am sorry that it has been financially difficult for your family. Both Medicare and Medicaid are there for such circumstance.
You should use them if you qualify.

Best wishes going forward.
WS

[stu]

Hi rp1954 , I think you are correct there . It is a very prescriptive approach , probably because of litigation and protocol and there is not room for independent approaches within the system that could save money .
WarriorSpouse, it is also correct that in a stage 4 setting what could be lifesaving for some becomes unobtainable . They did have a cancer fund for that reason but shot themselves in the foot by using it prescriptively for too many people . The likes of my mum responds really well to basic chemo so should be filtered off and leave the other treatments for patients more in need . I got the impression that did not happen and was mismanaged to the point it was financially impossible to retain . Such a shame .
It’s concept was to allow specific funding for rarer treatments to happen . It’s definitely the stage 4 patients that pay the price . It’s the weakness in the system .
Stub

[boxhill]

@WarriorSpouse, thankfully, we have had real health insurance for the last 8 years, since my husband has been employed with a real company for that time.

We never qualified for Medicaid, because we owned a house and car and had savings. Medicaid is actually very hard to get, despite what one reads. We did qualify for charity care from a local hospital when H had prostate cancer surgery shortly before becoming a regular employee at his current company.

As fate would have it, my emergency colon surgery and cancer diagnosis happened just a few weeks before my 65th birthday. Had we not had conventional insurance, we might well have had to bear the entire cost of $54K+ ourselves. And of course the bill would have been much higher, since it would not have reflected the deep discounts negotiated by insurance companies. (Another thing that many of the comfortably-insured do not realized is that the uninsured are billed at a rate often fully twice the cost of the insured.)

[crikklekay]

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.

My experience with the US healthcare system is very similar to boxhill. For years when we were starting out my husband was uninsured, because despite working at an auto shop fulltime they didn't provide health benefits and private insurance was insanely high, especially since I had pre-existing conditions. I worked for a small company and they didn't offer health benefits either. So since I was the one with health issues we bought insurance for me and he had to go without. This was all during the great recession so it wasn't exactly easy to just go out and get another job. Eventually, my company starting offering health plans so he was finally covered which is good since John did get laid off and found another job with a large corporation but they didn't offer health benefits unless you were salary. It's only thanks to the Affordable Care Act that they changed that policy and started offering it to high level full-time hourly staff too. The insurance prices for small companies is way higher than larger ones, so we switched to his plan.

I will never forget sitting in the hospital with my sick and newly diagnosed husband terrified we'd lose his coverage and not be able to pay for his care. FMLA was our hero and I worked hard to make sure everything was submitted to the letter so they couldn't get us on a technicality. But the first two months was torture as we tried to make sure he didn't dip below the 30 hours a week mark, which would mean termination of his health benefits. Our first hospital bill for the 2 weeks stay and surgery was $408,000 and that didn't include the costs for the doctors, the ER, or any of the tests as those were billed separately. His second hospital stay was $104,000 and the third was around $40,000. Each chemo treatment is $12,000-ish and that doesn't include the follow-up hydration and blood tests. We had to pay $10,000 in max out of pocket costs, (They put the whole first hospital bill into 2017 since he was admitted Dec 30th, so $5K for 2017 and $5K for this year and that's for the second-best insurance plan available) but I'm so incredibly blessed we had that much in savings. We've been saving for years to buy a car, and that's the only reason why we aren't up to our eyeballs in credit card debt to cover it.

For a household of two people, you have to make under $21,892 combined to qualify for Medicaid in Virginia and even during the recession we made more than that. He's able to work so he can't get disability, too young to retire early and get anything through Medicare. We are in the lower-middle class so there is no health care safety net for us. We make too much to get assistance and too little to be able to easily afford private market insurance. And don't get me started on how our government wants to take protections away from people with pre-existing conditions, every time that's discussed my heart skips a beat. We may have some great hospitals and doing some awesome research, but our system is incredibly broken.

[WarriorSpouse]

Krikklekay, I am sorry that things in Virginia have not been easy for you and your family.

I am curious to how much a years worth of premiums and deductibles have cost your family under the ACA. I agree that it is a big part of healthcare stability in the U.S.; but I also understand that private plans can be less expensive because of larger risk pools and higher company matches for shared premium costs.

Although the hospital bills always show big numbers to me as well, I never look at them in that "retail price" way. Just because they put that number down does not mean your insurance will pay it. Most insurance, including the ACA policies, have yearly deductible ceilings per family. Let the insurance company do the dance with the service provider. That is between them. Let them duke it out.

My approach is to add the costs of the yearly premium, plus the maximum deductible, and divide by 12 months to budget. The hospitals we deal with have monthly payment plans, although we have budgeted our yearly expense in a healthcare escrow, just like we do for our property taxes and other anticipated housing / vehicle expenses. This stuff is not easy, I get it.

Boxhill, once you guys hit age 65, you do qualify for Medicare. I hope you have already put your paperwork in for this. Whatever you have for a private policy will supplement the deductibles on your Medicare policy. They should compliment each other and make things easier. did this happen for you? I know from helping my parents with Medicare, there are healthcare advocates in every hospital. They can assist in bridging the communication issues between insurance and Medicare if needed. They are experts in this but need to be asked if you need their assistance.

Again, my initial post was to show that the UK's NHS denied the payments for Avastin treatments based on cost benefit analysis, and not if it would actually work or not on the patient. Clearly the drug works for the UK oncology nurse involved, my wife and others in our cancer community. That type of cost analysis has not take place under my Blue Cross / Blue Shield insurance plan. Has anyone in the U.S. reading this post have a known drug denied because it costs too much based on your healthcare plan? I am curious to know.

All the best to those moving forward each day making the best care decisions possible for your families.
WS

[MissMolly]

Warriorspouse:
Anyone with employer provided medical insurance in the Inited States should be aware of the costs of a policy through the Affordable Care Act.

Anyone can become sick and become unable to retain the necessary employment hours/work status that provides employer provided medical insurance.

I am one such case. I worked for a Top 5 consulting/accounting firm before chronic ill-health found me. I was professionally driven, a diligent worker, on trajectory to full partnership with the firm. I had employer provided health insurance that was top rate. Life was carefree. I earned a strong salary and meticulously saved to build a comfortable financial portfolio.

Frail health has side-lined me for the past 6 years. I receive Palliative Care as my health conditions are considered life-threatening and progressive. There is no “fix” for what ails me. There will be no getting better.

I have purchased medical insurance through the Affordable Care marketplace for each of the last 6 years. I am a frequent consumer of health care and purchase the most comprehensive policy available in my area. I have met the out of pocket deductible each year.

What I can unequivocally say . . .

Living with chronic loss of health is expensive. Period. Even with the best of medical insurance that I can purchase through the ACA.

I am single. 57 years of age.

My monthly medical insurance premium is $1,200. My monthly dental premium is $100. Annual premium expenses: $15,000.

I purchase a top tier Gold plan, the most comprehensive available. There are no out of network benefits and there are strict policy limits for types of services and care. The annual deductible is $6,800.

My 2018 out-of-pocket expenses, inclusive for monthly premiums and the annual deductible: $22,000. This will be my minimal out-of-pocket expenses.

I have been facing personal out-of-pocket medical expenses of $22,000 plus for EACH of the last 6 years. This is my reality.

Insurance does not provide for many of my needed ostomy supplies, nor does it pay for medications prescribed not on the approved formulary, not for integrative/holistic care that improves my quality of life.

I cringed this morning on reading the newspaper. Legal challenges to the Affordable Care Act’s protection for pre-existing conditions has been filed in federal court. This filing should give everyone on this forum who may be afflicted with a serious health diagnosis extreme concern. Without protection for pre-existing conditions, I am “toast.”

I was a marathon runner before chronic ill-health found me. I subscribed to a healthy life style. I earned three master’s degrees, earned with highest distinction. I a gentle and honest person. I never saw serious loss of health on my personal radar.

My health care expenses are exorbitant. Year after year. I do not see how it will be sustainable. I tire of the struggle.

My story could be anyone’s story. It is a intimately humbling and sobering reality.
Karen

[NHMike]

Warriorspouse:
Anyone with employer provided medical insurance in the Inited States should be aware of the costs of a policy through the Affordable Care Act.

Anyone can become sick and become unable to retain the necessary employment hours/work status that provides employer provided medical insurance.

I am one such case. I worked for a Top 5 consulting/accounting firm before chronic ill-health found me. I was professionally driven, a diligent worker, on trajectory to full partnership with the firm. I had employer provided health insurance that was top rate. Life was carefree. I earned a strong salary and meticulously saved to build a comfortable financial portfolio.

Frail health has side-lined me for the past 6 years. I receive Palliative Care as my health conditions are considered life-threatening and progressive. There is no “fix” for what ails me. There will be no getting better.

I have purchased medical insurance through the Affordable Care marketplace for each of the last 6 years. I am a frequent consumer of health care and purchase the most comprehensive policy available in my area. I have met the out of pocket deductible each year.

What I can unequivocally say . . .

Living with chronic loss of health is expensive. Period. Even with the best of medical insurance that I can purchase through the ACA.

I am single. 57 years of age.

My monthly medical insurance premium is $1,200. My monthly dental premium is $100. Annual premium expenses: $15,000.

I purchase a top tier Gold plan, the most comprehensive available. There are no out of network benefits and there are strict policy limits for types of services and care. The annual deductible is $6,800.

My 2018 out-of-pocket expenses, inclusive for monthly premiums and the annual deductible: $22,000. This will be my minimal out-of-pocket expenses.

I have been facing personal out-of-pocket medical expenses of $22,000 plus for EACH of the last 6 years. This is my reality.

Insurance does not provide for many of my needed ostomy supplies, nor does it pay for medications prescribed not on the approved formulary, not for integrative/holistic care that improves my quality of life.

I cringed this morning on reading the newspaper. Legal challenges to the Affordable Care Act’s protection for pre-existing conditions has been filed in federal court. This filing should give everyone on this forum who may be afflicted with a serious health diagnosis extreme concern. Without protection for pre-existing conditions, I am “toast.”

I was a marathon runner before chronic ill-health found me. I subscribed to a healthy life style. I earned three master’s degrees, earned with highest distinction. I a gentle and honest person. I never saw serious loss of health on my personal radar.

My health care expenses are exorbitant. Year after year. I do not see how it will be sustainable. I tire of the struggle.

My story could be anyone’s story. It is a intimately humbling and sobering reality.
Karen

I looked into ACA options last year because it was something that could potentially happen. I think that there is a time limit on COBRA and then you are on the exchanges. All of the exchange options in my state are HMOs (it was different in the first year or two on the ACA). I expect that my options would be weaker with the ACA options than they are with private healthcare but I didn't look into it enough to see whether or not the Boston hospitals would be covered. I suspect that I would have been better off with the pre-ACA options. Yes, they were very expensive, but I think that coverage for things like cancer would have been better.

I had a look at the ACA plans in MA and they only have HMOs in the few zip codes that I tried but the HMOs I found do include Dana Farber in their hospital network. Cost is comparable to what we pay at work for insurance. I would guess that the plans in MA are better than they are in my state because you have a bigger and likely healthier risk pool but I would need to look harder to verify that. At any rate, moving would be an option.

I have a co-worker on long-term disability for something as bad (or maybe worse) than cancer and she may be in a similar situation. She's also very accomplished, and a lifelong athlete and facing a chronic and debilitating disease where damage and loss of function is cumulative. I think that she is on COBRA right now. We had a long talk on a variety of topics - something that you can do when you're in the dark place of cancer or other things.

Thank-you for talking about yourself and revealing details of your background. I think that many are reluctant to reveal details because of privacy but it helps to get to know you better.

[WarriorSpouse]

Well said NH Mike.

I have seen families relocate for their kids education. It makes sense to see families consider relocating for better healthcare too, especially a neighboring State or Province. The downfall is leaving family and social safety nets that are difficult to rebuild being sick and on the move.

For those who read these post, who are healthy and considering retirement cities, this conversation should hit home. Being as close to good and reasonably priced healthcare should be a big part of anyone's decision before relocating in retirement. Everyone dreams or retirement in a remote and peaceful location, but all should consider the proximity to good and decent healthcare before making any choice.

Again, two pages into this dialogue and I am still the only one surprised that the UK deliberately shut off payment of a cancer drug (Avastin) that is saving the oncology nurse's life, based solely on the cost of the drug. That is my concern for starting this conversation. Has anyone here been denied care like this because of price / cost?

I do appreciate seeing how others have been effected with the expense of coverage and the mechanisms available in other locations to help pay for good care. The disease has no boundaries and there should be no boundaries in the effective care and treatment, regardless where you live.

WS

[NHMike]

Well said NH Mike.

I have seen families relocate for their kids education. It makes sense to see families consider relocating for better healthcare too, especially a neighboring State or Province. The downfall is leaving family and social safety nets that are difficult to rebuild being sick and on the move.

For those who read these post, who are healthy and considering retirement cities, this conversation should hit home. Being as close to good and reasonably priced healthcare should be a big part of anyone's decision before relocating in retirement. Everyone dreams or retirement in a remote and peaceful location, but all should consider the proximity to good and decent healthcare before making any choice.

Again, two pages into this dialogue and I am still the only one surprised that the UK deliberately shut off payment of a cancer drug (Avastin) that is saving the oncology nurse's life, based solely on the cost of the drug. That is my concern for starting this conversation. Has anyone here been denied care like this because of price / cost?

I do appreciate seeing how others have been effected with the expense of coverage and the mechanisms available in other locations to help pay for good care. The disease has no boundaries and there should be no boundaries in the effective care and treatment, regardless where you live.

WS

This is a similar case but the patient was able to live in the US and get care that was denied by her home medical system.

https://blog.jimmyfund.org/2017/12/norw ... treatment/

We've used very little healthcare over the decades but my wife did have an issue many years ago and our HMO denied a diagnostic procedure. I just went up the management chain to where I found someone with the authority to say yes. It left a bad taste in my mouth with HMOs though. The US really has 50 healthcare systems as states have a moderate amount of control over various aspects of healthcare. There are Federal requirements but the Feds do limited levels of implementation.

[boxhill]

"Although the hospital bills always show big numbers to me as well, I never look at them in that "retail price" way. Just because they put that number down does not mean your insurance will pay it. Most insurance, including the ACA policies, have yearly deductible ceilings per family. Let the insurance company do the dance with the service provider. That is between them. Let them duke it out. "

Sure, that's fine, **unless you are uninsured.** My point was that the uninsured are billed at a much higher rate than the insured. The uninsured have to fight on their own.

"My approach is to add the costs of the yearly premium, plus the maximum deductible, and divide by 12 months to budget. The hospitals we deal with have monthly payment plans, although we have budgeted our yearly expense in a healthcare escrow, just like we do for our property taxes and other anticipated housing / vehicle expenses. This stuff is not easy, I get it."

People who are perfectly competent financially can still have insufficient funds, you know.

"Boxhill, once you guys hit age 65, you do qualify for Medicare. I hope you have already put your paperwork in for this. Whatever you have for a private policy will supplement the deductibles on your Medicare policy. "

Wrong. My insurance through my husband's employer is the primary payer. You are probably thinking of those who have a "medigap" policy, which is a completely different thing.

[WarriorSpouse]

MissMolly, Thanks for sharing your story and the specifics with the ACA. No doubt the ACA has been helpful for those in similar positions. I would not expect those policies to change, since they are mostly covering those who need it most. The premiums and deductible appear to already be priced in for pre-existing conditions. I am not certain if what you are reading, if passed, may actually put more people on the ACA plans, and in a weird way, could lower premiums there by increasing the pool of ACA consumers. Time will tell, but clearly Congress did not have the appetite to fully eliminate the ACA, and for good reason.

NH Mike, Thanks for sharing the Dana Farber / Norwegian article. This is another example of the national plan doing cost benefit analysis and dictating what they will pay for and not. Fortunately, for the patient she has a legitimate reason to be seeking treatment at Dana Farber in Boston.

BoxHill, I am sorry to hear of the position you describe. I have provided some ideas based on my limited knowledge. I would suggest using the hospital's oncology nurse navigator to help you find additional things that we are not discussing here, that may also help if needed in your area. Good luck in your process moving forward.

Does anyone else have a story to share where a cancer drug is being denied simply due to the cost that will not be covered by Insurance or the State run program, similar to the UK and Norwegian articles linked above?

Thanks
WS

[MissMolly]

Warriorspouse:
Please refer to a reputable news source to become informed of the current legal challenges being filed in federal court regarding pre-existing conditions.

The filings are contesting the constitutionally of medical insurance providers to be required to cover for pre-existing conditions, as is now mandated by the Affordable Care Act. It is a calculated attempt to have the mandates of the ACA declared unconstitutional and the provisions of the current law deemed unlawful. The federal filings, if successful, would erase coverage for pre-existing conditions and would be a seismic affront to the hard-won protections now enshrined in the law. I suspect this matter will wind its way through the federal court system to the Supreme Court.

I would include a link to a mainstream news source but I am technically naive as to how to post a link on a personal forum post such as this.

Protection for pre-existing conditions should be of vital interest to anyone and everyone. Any inkling of an infirmity on your medical record can be considered a pre-existing condition by the purveyor of an insurance adjuster. Example: A discussion of irritable bowel with your MD can be used against you in later years if there arise gastrointestinal symptoms to deny coverage. Asthma, depression, diabetes, attention deficit disorder, seizures, seasonal allergies, hypothyroidism, - the list is endless of pre-existing conditions that follow a person on their medical record. The passage of the ACA and its legal protection for pre-existing conditions is something that protects people from the very real threat of medical bankruptcy.

The Affordable Care Act affects not only individuals who purchase medical insurance on the open market but also employer based plans by specifying the legal obligations of medical insurance providers in the scope of services that must be covered. The recent federal filings challenging the pre-existing condition coverage mandate of the ACA should have everyone concerned.

Anyone can have my misfortune of falling ill and being unable to sustain employment that provides for employer-provided medical insurance benefits. Anyone.

And the truth is that everyone will be “sick” and require access to healthcare in their lifetime. Anyone who feels that they are healthy and can forego medical insurance is myoptic.

The pricing structure of healthcare in this country is in the stratosphere and beyond the ability of even the financially secrure to self-pay. And healthcare pricing does not take into account the benefit, or lack of, for the healthcare expenses incurred. For all of the healthcare services that I access, my quality of life is marginal and my state of health poor. I am barely treading water.

We are in troubled times as a nation and as a world.
Karen

[WarriorSpouse]

MissMolly,
I understand what your concerns are. The Supreme Court supported everything in the ACA when it was established, I find it difficult that they would overrule themselves with so quickly. Insurance is something everyone needs in America. Purchasing it at the time one enters poor health is probably what they are attempting to resolve.

The expectation is for healthy adults to be employed, buy insurance, and have well funded pools to support those who are sick. American healthcare is not going away and neither is the ACA's plans for coverage. Funding for Medicare and Medicaid are at all time highs. Buying private insurance at the time of sickness may be the issue, but the ACA, Medicare, and Medicaid are here to stay... regardless what you read. Do not let others scare you into thinking differently. Good luck in your process forward.

Again, has anyone have evidence of being denied a drug or treatment that is known to work for the patient due to costs, similar to the UK and Norwegian examples referenced above. Thank you.
WS