AussieNeilAdministrator in reply to Indolent4 years ago

I think you'll find it worthwhile reading about the development of the first successful monoclonal antibody for another leukaemia - CML: cancer.gov/research/progres... It took some convincing to fund the approval process for Imatinib/Gleevec, due to considerably to the small perceived market for the drug. However, the drug was so successful, what was initially a fairly stable market grew quite considerably, because patients who were living limited lives, went to having a normal life expectancy for which they depended on Imatinib/Gleevec maintenance therapy. I can recommend reading about this in more detail in the book "Emperor of all Maladies".

Extending that success to CLL is financially not long term sustainable, but thankfully we have CLL researchers that are actively exploring combination therapies that can give us long remissions and perhaps even a cure from a limited time treatment.

bhayes84 in reply to AussieNeil4 years ago

I haven't read "Emperor of all Maladies" but the PBS series based on it was very good. Unfortunately it doesn't seem to be available on the PBS website.

After digging I see the 3 part series is available on Amazon: free under Prime, $6 per part otherwise.

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Jonquiljo in reply to Indolent4 years ago

There are a lot of things that you aren't taking into account.

1.) BTK inhibitors are useful for a number of cancers.

2.) Some 2nd or 3rd generation BTK inhibitors will not be better than others.

3.) There is a world wide market for these drugs if the prices lower a bit. The US system is an anomaly. Medicare and Medicaid are big markets for these drugs - but they aren't allowed to negotiate prices when paying for these meds. So, for example, if your co-pay for a year's supply of Ibrutinib is $9,000 - the US government picks up the tab for the difference from retail - of $14,000 a month - ~$170,000 per year. The private insurers probably pay half retail for their insureds - but that is likely a small fraction of patients. Either way their hideous pricing will eventually anger the hands that feed them. They already are.

4.) As the price goes up, there will be a lot more people willing to go through clinical trials. Many people cannot even pay the co-pay for the meds themselves and the assistance agencies are constantly running our of money as the meds become more expensive.

Actually the "abusive" rules that favor the drug companies will make it easier for "us" to actually get these drugs cheaper. And yes, with a bit of competition out there they will start to fight against each other. If they don't lower prices, consumer sentiment will force pharmaceutical reform in the US. That will lower prices all over the world.

And, of course, there is the US Medicare and Medicaid systems that are sitting there paying full price for all drugs, spending trillions of dollars and running quickly out of money because of it. I suspect that organizations like the UK's NHS are at a disadvantage as they are competing with a market (USA) that will pay these people list prices. Ego, is also a large factor - as aside from money, these companies want to think they are better than each other.

Scientific study that likely began 30 years ago is now paying off for these people. They are in a feeding frenzy right now, but it will be over in a relatively short time. They knew this 30 years ago and want to extend it as long as possible.

We are just in a new phase of cancer treatment where a lot of treatments are oral drugs, not infusion-based chemotherapy. The prices are not sustainable. Leukemias and lymphomas (especially the CHRONIC ones like CLL) are big targets for these companies. CLL is one of the biggest candidates. So yes, there will be a lot to see in the next 5-10 years. Even if the goal of MRD is eventually replaced by "cure", we still are going to be well supplied for a long time. It's kind of paradoxical that a "cure" for CLL will be the one thing that could push away the pharma companies. Instead of the potential of selling a patient 10 or more years of drugs, the prospect of only 3 months to cure him/her is not so appealing from their point of view.

CllcanadaTop Poster CURE Hero in reply to HopeME4 years ago

Most drugs come from start ups, and they need ODA to even get it to the lab stage. Most hope to be gobbled up by a big player... like Pharmacyclics was...for Imbruvica (ibrutinib)...Acerta for acalabrutinib, ONO/Gilead for tirabrutinib

CllcanadaTop Poster CURE Hero in reply to Jonquiljo4 years ago

No CLL is under 200,000 it is also a Rare and Neglected Disease... Each indication is treated separately so MCL, CLL and WM are all under the act... as separate diseases...

General figures

US Epidemiology: 2016

Incidence: ~19,000/year

US Prevalence: ~130,000 cases

• Median age at diagnosis: 71 years

Jonquiljo in reply to Cllcanada4 years ago

Oh, well I guess I would have expected more people with CLL than that. I keep forgetting that CLL is somewhat uncommon.

Either way, I doubt that the tax incentives and the giveaways are useful now. The new US corporate tax scheme for 2018, while horrifically wrong, does give most corporations an enormous amount of cash to play with that they never had before.

But the relaxed regulations for clinical trials and overall testing from the orphan drug act probably makes it a lot easier for all these new drugs to make it to the market.

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Indolent in reply to bhayes844 years ago

Even with Medicare, most are faced with $10K or more each year..... every year. That's a big hit to most budgets. And even more insidious, these exorbitantly expensive drugs is putting a huge drain on this insurance program, which is already on an unsustainable path. All of this is like watching a slow motion train wreck unfold.

bhayes84 in reply to Indolent4 years ago

I would guess many/most patients are getting assistance with copays. When I got assistance for Ibrutinib my doctor said all of his patients, except the very wealthy, have been able to get assistance. I'm keeping my fingers crossed that I get assistance for acalabrutinib - I couldn't afford the full copay.

I agree about these costly drugs having a huge impact on Medicare; especially as the population gets older.

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Justasheet1 in reply to bhayes844 years ago

Bill,

I’m really surprised to hear that they would pay for it. It’s never been my experience. I’m extremely pleased for you.

Jeff

bhayes84 in reply to Justasheet14 years ago

My understanding is that it was just recently added to the Medicare Part D drug list. I'll be happy if I can get copay assistance. Before it was added to Part D AstraZenica was providing it at zero cost, so we'll have to see if the change is an improvement for me.

Meanwhile, on a personal note, two months after stopping Ibrutinib I'm still having episodes of awful blistering rashes with no idea how long they will continue.

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Justasheet1 in reply to bhayes844 years ago

Do they feel it’s still due to the Ibrutinib? Or is it the acalabrutinib? Maybe BTK inhibitors aren’t your thing?

Venetoclax headed your way?

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bhayes84 in reply to Justasheet14 years ago

I haven't started acalabrutinib yet so we're assuming it's due to IB, though my onc has only seen one slightly similar case. I've done lots of Googling and can't find more info. Frankly I don't know where to go to figure this out.

Interestingly the acala was approved by my pharmacy and the first month billed to Medicare noting my copay is $754 (though it doesn't say I owe that yet). I hope to hear from AstraZenica this week.

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Justasheet1 in reply to bhayes844 years ago

$754 a month? 🤯

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bhayes84 in reply to Justasheet14 years ago

Yes. Breath taking isn't it? That's the 5% Part D copay of $14,333 for one month of acalabrutinib.

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