Medicare plan D coming $2000 yearly drug copa... - CLL Support

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Medicare plan D coming $2000 yearly drug copay cap looks to soon be law.

Pacificview profile image

I was already on watch and wait when I transitioned to Medicare from private insurance. I signed up for traditional medicare and a plan G supplemental. As those plans seemed to be the best for me considering my disease. I have been exceedingly happy with that combo. Because those two have covered all my care.

The weak link in my coverage has always been my plan D. Having CLL and knowing one day I would need some expensive drug and or drugs. Has been a source of concern. Knowing that I could be on the hook for huge copays for drugs in pill form taken at home. Well, this medicare copay cap coming. For me is a huge relief! $2000 copay a year is totally afforable. It compliments coverage I already have quite well. I could not be more pleased for all of us on medicare!

33 Replies

It will be very helpful for people on Medicare and should reduce drug costs going forward.

I will need treatment soon. Just not sure when. I might be eligible for a trial but I won’t know until we decide it’s time to start. The out-of-pocket costs were one of the considerations.

But really, my main fear is the bone marrow biopsies. If the trial offers then sedation for these, I would participate in a trial just for the sake of helping improve treatment.

Sedation before biopsy please!

What year would the cap start in?

Not until 2025.

We have this system in Canada and that's why there is no new drug development in Canada. Considering that a lot of CLL patients including my husband are alive today precisly because of the development of very expensive but very effective drugs against CLL such a policy may stop the only pharmaceutical companies in the world that are into developing new drugs, ie those in USA ,to come up with new and very much needed medications for diseases like cancer

AussieNeil profile image
AussieNeilAdministrator in reply to ikahan

According to there are 25,670 clinical trial studies in Canada. There are 4,404 recruiting or not yet recruiting in Canada.

Australia modelled its Medicare system on the Canadian system. It came into operation in February 1984. Venetoclax came out of Australian research, which commenced in the late 1980's. Australia has been working on several COVID-19 vaccines.

Australia has a Human Papillomavirus (HPV) vaccination program, which with a National Cervical Screening Program are world-leading and have put us on track to eliminate cervical cancer by 2035.

Per the Wikipedia entry

"Research findings that pioneered the development of the vaccine began in 1991 by investigators Jian Zhou and Ian Frazer in The University of Queensland, Australia. Researchers at UQ found a way to form non-infectious virus-like particles (VLP), which could also strongly activate the immune system. Subsequently, the final form of the vaccine was developed in parallel, by researchers at Georgetown University Medical Center, the University of Rochester, the University of Queensland in Australia, and the US National Cancer Institute.[85]"

The 50 largest drug companies in the world, by country:-

By my count only 16 of the 50 are based in the USA. The list includes an Australian and Canadian drug company. I think you'll find that the majority of the 34 companies not based in the USA are based in countries with universal health care.


ikahan profile image
ikahan in reply to AussieNeil

I am talking about new cancer drug development by pharmaceutical companies ,not drug research or clinical trials of drugs developed in the USA. Canada hardly has any pharmaceutical industry at all. Venetoclax may come from an Australian research lab but is produced by a US drug company that spent millions of dollars in running clinical trials and developing it

AussieNeil profile image
AussieNeilAdministrator in reply to ikahan

You can't profit from new drug development without clinical trials. Perhaps there are other factors at play besides your universal health care system that are stymieing development? How else do you explain the drug development in other universal health care countries? I expect that there is a 'brain drain' and other factors involved, given the USA has about 10 times Canada's population.


montieth profile image
montieth in reply to AussieNeil

YaY for Canada and Australia. Hopefully the U.S. will see the light and develop a system like yours.

CycleWonder profile image
CycleWonder in reply to ikahan

The bill that just passed the US Senate took into consideration the need for drug research. The following analysis of the bill might ease your mind:

Medicare would be able to negotiate prices for some drugs but not all, as follows:

“Drugs that would qualify would include those that don’t have generic or what is called biosimilar equivalents — copies of more complex drugs. Depending on their type, it would have to be nine or more years since their approval by the Food and Drug Administration, which means newer drugs would not be included.”

Annie1920 profile image
Annie1920 in reply to ikahan

USA aren't the only country in the world developing new drugs.. Astrazenica is Swedish and Venetoclax is produced by a German firm

DanBro1 profile image
DanBro1 in reply to ikahan

So, Ikahan, are you saying that I, as a US citizen, am paying for your new and wondrous cancer drugs and Canadian citizens are getting a free ride?

ikahan profile image
ikahan in reply to DanBro1

I didn't say that at all ! People in Canada and elsewhere pay for these medications through private and public plans (ie paid through our taxes which are very high ). It is absolutly not free , Here I am talking about development of new drugs which happens primarily in US. By the way b/c these drugs are developed in US you have access to them long before the other countries. For example ibrutinib was approved by FDA in 2013. In Canada in 2018 ibrutinib was approved as first line only for unmutated IGHV. For mutated to this day you need to get FCR first before you can receive ibrutinib. I personally know several CLL patients that died b/c they received FCR between 2013 and 2018 who could not get ibrutinib and had their immune system most likely damaged by FCR as well as other complications . This was atragedy and completely avoidable if Canada had covered ibr earlier

This is the consequence of having a healthcare system that is based on saving money first and puts money over lives

CycleWonder profile image
CycleWonder in reply to ikahan

It is always sad when someone dies who might have lived with new treatments. As I pointed out in a previous post, Medicare will only be negotiating on a subset of medications that does not include new medications.

How the drug research will respond remains to be seen. It could increase research since the most money to be made will be on newly approved medications rather than older drugs.

I believe the intent is to stop the practice of raising the price of older, very necessary medications, by 800%.

As far as how the Canadian government approaches treatment options, only people in Canada can affect that. In any case, my take in this bill is that it was carefully and thoughtfully written and should help many people on Medicare in the US.

DanBro1 profile image
DanBro1 in reply to ikahan

Ikahan, your point is well taken, but that being said, I can assure you that for every Canadian citizen who dies because they did not receive the most up-to-date drug, 10,000 US citizens died because they don't have access to basic health care. Also consider that even if patients manage to pay their medical bills, about 62% of all bankruptcies in the US are caused by medical debt*. Canada and the UK achieve "greater good" results for their medical dollars spent. Here in the US, drugs are priced at "what the market will bear".... it has nothing to do with development costs.

ikahan profile image
ikahan in reply to DanBro1

I think you are misinformed about the Canadian healthcare system. Is not even as good as your Medicare. If you have a very common disease the system works well. However if you have cancer you may not be able to get access to important medication. If you need to see a specialist you need to wait for months to get an appointment. Hospitals are full of bureaucrats but it's very difficult to get an admission to hospital even if you go to the emergency department. Not enough nurses and doctors. Many people go without getting necessary treatment.

Please see link below

Another Aspect of the Dem Disaster: Drug Price Controls

CycleWonder profile image
CycleWonder in reply to ikahan

I have worked in regulated industries most of my professional career. Regulating prices is very common in situations where it is in the public interest to rein in excessive profits due to inelastic demand combined with monopoly power.

Inelastic demand means that even if prices are raised significantly, the product will still be purchased by consumers because it is a necessity. In areas of commerce where there is competition, consumers can choose to buy a product from another supplier. In cases where a company has monopoly power, the consumer has no choice but to pay the higher price.

In some cases in the US, such as with insulin and Epi Pens, unscrupulous companies have cornered the market on these drugs and raised the price to absurd levels. These companies do not engage in research. It is not part of their business model.

The companies that do introduce new drugs are well used to regulation, perhaps not this particular flavor. I can assure you they will adapt.

I expect millions of people 65 years and older in the US to benefit from this much needed market regulation.

Regulation of certain industries with monopoly power is pretty common. Some situations are regulated better than others. One that is not well regulated is the Texas power market where the power suppliers set the rules. This resulted in deaths and extremely high prices for many in Texas, and extreme discomfort when extreme weather moves into Texas. In other power markets, the regulation is more even handed. Power suppliers do not dominate the rules so power plants must run even in extreme weather, and prices are regulated. I provide this example to show that regulation can work well if properly designed.

In any case, the issues with the Canadian Health Care system need to be resolved by Canada. It is appropriate for the US to make changes to its’ healthcare system.

ikahan profile image
ikahan in reply to CycleWonder

Your faith in the beneficence of Goverment is touching. Nonetheless people died in Canada and other countries who did not have access to Ibrutinib for years after it was shown to be effective and it was available widely in the US. The same now with lack of access to Evusheld in Canada and especially in UK where immunocompromised people are still isolating and lonely.

Goverment attempt to save money can be just as cruel and ruthless as private companies drive for profit and governments have at least as much monopoly power as private companies.


CycleWonder profile image
CycleWonder in reply to ikahan

My faith in government intervention is more than “touching”. It is based on decades of experience working with state and federal regulators, businesses and consumer advocates.

I am sorry that the Canadian health system is making decisions that you don’t agree with. That does not imply that all government regulation is bad or that the coming changes to the US health system will cause harm to people with CLL in Canada.

With the trials ongoing now with V&O testing how long the treatment needs to last, there will come a realization that a short term use of V&O may be better for all involved as opposed to relying on BTK regimen indefinitely.

But again, that is a decision for Canada as a nation to make. The US Congress does not control Canada’s health system nor should it.

ikahan profile image
ikahan in reply to CycleWonder

I am sorry that you don't see how damaging the decision of your US governmet to control drug prices can potentially be to CLL patients all over the world. Even more upsetting is the fact that you don't seem to show much compassion for the death of CLL patients in other countries as a result of policies that you seem to embrace in your own country

Please again read the link below that comes from a publication in your own country.

DS37 profile image
DS37 in reply to ikahan

I share your concerns about price controls and how they may impact drug development but feel compelled to point out that the powerline blog is a far-right publication that may not be credible.

ikahan profile image
ikahan in reply to DS37

Powerline blog is not "far right"; it's conservative. Dismissing alternative points of view because of some label shuts down discourse and increases polarization.

AussieNeil profile image
AussieNeilAdministrator in reply to ikahan

I guess it depends on the position of the reviewer, for example states;

"Overall, we rate Power Line strongly right biased based on story selection that always favors the right. We also rate them Mixed for factual reporting due to the use of poor sources that have failed numerous fact checks, as well as rejecting the consensus of science when it comes to climate change. (D. Van Zandt 10/30/2016) Updated (10/12/2020)"

Graphically Media Bias Fact Check rates Power Line Blog between Right and Extreme Right.


ikahan profile image
ikahan in reply to AussieNeil

People shouldn’t let "fact checkers", or anyone else, tell them what to read and what to think. The “Media Bias fact checker’ is a case in point. As far as I can tell, they rate journals as ‘biased’ or ‘anti-science’ if they express any skepticism or concern about the social impact of climate change policies. Here’s what they say about the Wall Street Journal:

“Overall, we rate the Wall Street Journal Right-Center biased due to low-biased news reporting combined with a strong right-biased editorial stance. We also rate them Mostly Factual in reporting rather than High due to anti-climate, anti-science views, and occasional misleading editorials.”

The New York Times, of course, is rated as High, but at least on climate policy, the Wall Street Journal is far more balanced, in depth, and thoughtful. Here’s a link to an article on ESG:

Opinion | The ESG Investing Backlash Arrives

State AGs seek answers from BlackRock, and a new firm offers alternative investment funds. Strive’s first fund raised more than $100 million in a week.

ESG stands for Environmental and Social Governance. Investors gave Sri Lanka a near perfect ESG score, because the government banned fertilizer imports. But this policy, while favoured by climate activitists, was an absolute disaster. It was one of the main factors in the collapse of the Sri Lankan economy and mass starvation.

We should be highly skeptical of fact checkers or anyone else who set themselves up as arbiters of what to think or read.

AussieNeil profile image
AussieNeilAdministrator in reply to ikahan

While I take your point, I tested the Media Bias fact checker statement regarding Powerline Blog and climate change and here is the result:

Personally I consider that my life was threatened by climate change. Early in my treatment, I needed to be transferred to a major hospital by Australia's Royal Flying Doctor Service. My transfer was delayed, because there were no free beds. Much of Eastern Australia was on fire - the bushfire smoke drifted right around the southern hemisphere. About half of Kangaroo Island, which is 1,700 square miles in area in South Australia, a place I visited on holiday a few years prior and from which I've shared photos in posts to this community, was burnt out in those conflagrations and there were other serious bush (wild) fires in that state. The Health Department in my state had to rent hotel accommodation for well over 100 people suffering from smoke inhalation and heat stress and had nurses monitoring their condition.

A couple of months prior to starting treatment in 2019, my wife and I visited Europe and were stunned to experience a record high temperature of 43C in the Netherlands - more typical of Australian summers! We are having record heat waves again this year in the Northern Hemisphere. Meanwhile East Australia is experiencing repeated record flooding.

How well do Powerline Blog articles match the recommendations of CLL specialists

COVID-19 vaccine

Powerline Blog search for masks

Powerline Blog search for COVID-19

Covid deaths

So excuse me if I don't consider Powerline Blog a good source of unbiased news with a respect for science and medical science.


Drug developement happens all over the world , but what they all look for is FDA approval to sell in the U S because that's where the money is. However I don't think letting Medicare negociate prices will necessarilly slow drug developement. There's a difference between being able to make a profit and just being able to charge what ever you please.


Like you, I have Medicare Plan G with a supplemental (Humana) plus Rx Plan D. My 6 Obinutuzumab infusions were covered at 100% because they were administered in a hospital setting ($42,204 per 6 month treatment regimen) and my 12 months of Venclexta cost $13,080 for 120 pills each month (5% copay cost me $653.69 per month). Of course, citizens of the UK, Canada, Australia, France and Germany pay less than half this amount (I Googled this information). A $2000 cap on out-of-pocket payments would be a welcomed relief, however, I do not believe that this new rule goes into effect until the year 2026.

johnliston profile image
johnliston in reply to DanBro1

I've read 2025

Regarding drug development being reduced due to lower drug prices/controls. Fact is that only US and new Zealand let providers advertise drugs on TV plus other medium. Several studies indicated that ads cost actually exceeded the amount spent on research in many cases. Simple solution is for government to prevent the money being spent on ads, therefore more could be spent on research. That is exactly what the rest of the world is doing. Let your doctor give you the drugs you really need, as he/she is already bombarded with the drug reps constantly at their door passing out info - studies, trials and samples .

DawnRedwood profile image
DawnRedwood in reply to OSUfan

You are soooo right. I'm sick of seeing prescription drugs advertised on TV with all the horrible side effects as well. Then an ask your doctor if ********* is right for you!!!! Of course if it was "right for you" wouldn't your doctor already know about it. And of course after the ad for the drug there are al smiling people so happy because their loved one has that disease and is getting this drug.

My doctor does not see the prescription drug reps..........she said it takes up too much of her time so she has the Nurse Practitioner see them and get the samples. She also knows most of her patients cannot afford these new drugs. I sometimes wonder what happened to the ads for washing machines, refrigerators, stoves, vacuum cleaners, etc. None of those advertised on TV anymore.

So, to put this in perspective, drug companies have happily paid deductible and continue to do so for commercial insurers, in US, straightforward capitalism, they know more people will get/take the drug if the out of pocket costs are zilch.Not so Medicare, which does not allow drug companies to do this, thought being it could be seen as kick back. so going from commercial coverage to Medicare means confronting huge out of pocket vs zero when on commercial.

So, long story, short all of this hyperventilation about this aspect of the bill, is nonsense. the drug companies welcome it. I cannot speak to the rest of the bill.

And I also read that in that same bill that was passed the govt. will now have the ability to negotiate the price of Rx drugs. I hope that will also bring down the price of expensive meds.

I know that worry. It’s a big step, and it’s a big concern. I had had really great coverage before I had to start Medicare/Medicare. Fortunately I was referred to a person that helped me navigate the many choices and together we found a pretty good option. Still the costs of the drugs are a concern. I started Acalabruitnib in March and the copay was quoted at 3600 for my first 30 day prescription. Fortunately I qualified for assistance that is covering the copay. I was previously on Venetclox and a different program through the drug company helped with those costs. It’s worth asking about these programs. Your doctor should know of people who can help. Best wishes and hope someday we all have universal health care.

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