Is now the time to be writing you rep... - Advanced Prostate...

Advanced Prostate Cancer

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Is now the time to be writing you representatives about 177-Lutetium pricing?

slpdvmmd profile image
35 Replies

As we all know 177 Lutetium has been available overseas for 2 decades in Europe and almost a decade in Australia as well as multiple other sites. In all these sites the pricing for this treatment has been very reasonable at a prices ranging from $5000 to $13000 dollars per treatment (at least for the countries I made inquires at). While not a miracle treatment, this is a significant option that has not been available except on trial in the US for way too long. From what I have been able to determine the price point in the US could well be in the $150,000 to $250,000 range per treatment. I for one intend on writing my representatives about the need to be on top of this pricing determination.

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slpdvmmd profile image
slpdvmmd
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35 Replies
lewicki profile image
lewicki

Must be a serious conspiracy to not offer the treatment and attempt to over charge.Also, when will AC-225 be available in the US ? I had both ( same injection ) first time in 2019.

Puzzling .

Wife32 profile image
Wife32 in reply to lewicki

Where did you have your treatment?

slpdvmmd profile image
slpdvmmd in reply to Wife32

University of Heidelberg. Work through international office. heidelberg-university-hospi...

lewicki profile image
lewicki in reply to Wife32

University of Heidelberg

Ian99 profile image
Ian99 in reply to lewicki

Did I understand you to have been treated with LU-177 and AC-225? Did you have any side effects to your salivary glands or tear ducts? I am on Goserelin now for mets in pelvis and ribs, Lu-177 indicated as likely next step if needed. Thanks.

lewicki profile image
lewicki in reply to Ian99

Just now saw your post. I did have both treatments four different times. My PSA is < 0.08. No ADT for 13 months. Did have dry mouth from the glands not producing saliva. If you can see your why clear both is the way to go. AC-225 is hard to get I understand.

Ian99 profile image
Ian99 in reply to lewicki

Thanks for the reply. Good luck.

Tall_Allen profile image
Tall_Allen

Unfortunately, reducing drug pricing was taken out of Biden's bill. All Presidents of both parties since Clinton have tried unsuccessfully to reduce US drug prices. Senators keep blocking it.

in reply to Tall_Allen

$enators

statnews.com/feature/prescr...

Tall_Allen profile image
Tall_Allen in reply to

I doubt that any Republicans will vote for the bill even without Medicare negotiation of drug prices, but maybe we can focus our complaints to the worst Democratic legislators:

• Sen. Kyrsten Sinema, D-Ariz.

• Sen. Tom Carper, D-Del.

• Sen. Bob Menendez D-NJ,

• Rep. Scott Peters, D-Calif. (San Diego)

• Rep. Kurt Schrader, D-Ore. (Salem)

spencoid2 profile image
spencoid2 in reply to Tall_Allen

even if we reduced their drug plans to what they give us they are all so fucking rich that it would mean just one less ivory back scratcher.

slpdvmmd profile image
slpdvmmd in reply to Tall_Allen

I really try not to think of this as a partisan issue. I firmly believe both parties are equally as willing to take drug and medical equipment money. Had a colleague who took a year sabbatical to go work for Ron Wyden on healthcare. He was back on the job in six months because he said the office was flooded with drug lobbyists helping write anything to do with healthcare legislation and the office was also flooded with "dark money" from drug companies, implant companies, the American Hospital Association etc etc. Not picking on Wyden as you could probably put any senators (or congressman's) name from either party in the above sentence and the conclusion would be the same. I still however do not think writing letters documenting how Novartis who has purchased the rights 177 lutetium radioligand therapy will manipulate the price will hurt and it may at least help document the issue. Let's face it Novartis, who was recently fined for kickbacks over entresto and is again being investigated for continuing the practice, will be all in to maximize profit. Root around more and you can really blame it on the post Arthur Anderson and Enron fiascos that led to the DOJ adopting DPA's (Deferred Prosecution Agreements) as the way to prevent large politically powerful companies from being destroyed by legitimate implementation of the law. Dependence on DPA settlements are now part of the business plan for drug companies and other industries that allows them to know trouble will arise in 5-10 years but the profits will far out weigh any publicly announced settlement and for sure the ultimate private sealed settlement. Sad truths but truths non the less.

cesces profile image
cesces in reply to slpdvmmd

"I firmly believe both parties are equally as willing to take drug and medical equipment money."

That's the kind of thinking that is making it so easy and cheap for the pharma lobbysts to buy votes.

There is only one party who's official policy is to sell their votes to big pharma.

Statistically approximately 2/3 or more of the people use your rational or similar rationales to justify voting for that party.

We are getting the government that the most simple minded of us deserve. Unfortunately.

Schwah profile image
Schwah in reply to Tall_Allen

Of course they do. We all know why. They get money from these drug companies and sell their souls. What do trump And Biden have in common? They both tried and failed to allow the government to negotiate prices with drug companies for Medicare. They claim it will stifle the drug companies from creating new drugs. It’s unconscionable. Whether your a republican or Democrat, it stinks.

Schwah

Countries that have nationalized healthcare also have an advantage when negotiating drug prices because there is only one buyer.

Blackpatch profile image
Blackpatch in reply to

The minute you say “nationalised health care”, most Americans I know come over all righteous and make clear there’s never going to be that sort of socialism in the USA.

But in fact you don’t have to nationalise medicine in order to empower govt to negotiate drug prices. Australian medicine is not remotely socialised but the government negotiates drug pricing for any drug on the Pharmaceutical Benefits Scheme - PBS pricing controls almost any drug a doctor prescribes, for a max of $39/month. That’s not socialising medicine - it is socialising the great majority of drug costs, true, but you are perfectly at liberty to consult any doctor you like, either privately or through the (somewhat slower) public system. And you can purchase outside the PBS (eg for off label uses) any time you want - but the open market pricing for things like zytiga (I’d you’re taking it outside of standard of care usage) is still capped by the supply price the government has negotiated. When I was using zytiga a couple of years back (before generics) I was paying less than a third of the prevailing US free market cost.

Medicine in the US is totally FU - it is criminally negligent that such a rich society routinely bankrupts people because they’re sick, at precisely the time of their greatest vulnerability. There’s a lot not to admire about US politics (race relations comes to mind), but the iniquity of medical access and costs leaves all other issues in the dust.

lewicki profile image
lewicki in reply to Blackpatch

Amen brother.

Gemlin_ profile image
Gemlin_ in reply to

Another reason is that the drug companies know they cannot sell drugs at their US price level anywhere outside US, so they are willing to sell them at the price people will buy them (better to sell them cheaply than not at all).

in reply to Gemlin_

You're omitting one big difference between Australia and the US. Australia balances cost vs access to newer meds. I read on this site that treatments available in the US are not available elsewhere. For instance, i was dxd pt3bN1M0 in June 2019. I was put on ADT + Zytiga as my first treatment. I doubt this would occur for nonmetastatic patient in Australia. It definitely wouldn't occur in the UK in 2019. I'm sure there are dozen of examples.

What did I pay to have this access?

My weekly insurance contribution is $30 ($1560/year). The deductible is $3300/year. I contribute roughly 4k year to my HSA. My yearly out of pocket medical cost is $1560 + $3300 = $4860. The HSA is Tax Free going in and coming out. It rolls over year to year so It grows over time.

My point is, I'm paying $405 a month to have access to the best hospitals and the latest medicines. For me, that's a win.

Blackpatch profile image
Blackpatch in reply to

Actually, I omitted a hell of a lot of differences between the US an Australian medical systems.... but access to drugs is not one of them, broadly speaking.

You were able to access zytiga via your insurance to treat pT3BN1M0 in 2019... I started on Zytiga in late 2018 because my pT3BN0M0 led to BCR. Because I was M0, Zytigas was not SOC at that time, so I paid A$3600/month for the Zytiga - but there was no trouble accessing it.

Almost as soon as a new drug is approved in Europe or the US, it is available here. PBS pricing only applies once the drug is accepted as meriting government subsidisation, and that can take a while - but that is a pricing issue rather than a market access restriction.

in reply to Blackpatch

My point is...my insurance covered the use of zytiga in a m0 setting in 2019.My total cost for zytigs was $1500 the first month of the year anf $15 the remaining 11 months. 1615/year for my zytiga. I used my hsa account to pay for the meds since I had the money from previous yearly contributions. In the end my total yearly medical cost can not exceed $4860/yr.

I'm retaining control over my money, not the government and because my out of pocket is capped. do I really care what the price of meds are?

Spyder54 profile image
Spyder54

“ CAMPAIGN FINANCE REFORM” . No Man, Woman, Child, or Corporation may give more than $100. To any Candidate in any 12 month period. PERIOD!We as a Nation need to push for Campaign Finance Reform. No more quid pro quo. No more back office deals. Clean up politics. Let them hit the road to get re-elected. The media will give free coverage. Enough is Enough. GET BIG PHARMA OUT OF POLITICS !!

in reply to Spyder54

I have a bridge in Brooklyn for sale.The larger and more encroaching a government gets, the more corrupt it becomes. You cannot change human nature. Besides, nearly half the people are lawyers. The more laws, the more court cases, the more money available for lawyers. It's all about the lawyers. You should understand that by now.

lewicki profile image
lewicki in reply to Spyder54

Amen brother.

larry_dammit profile image
larry_dammit

Hate to get political but just another reason to drain the swamp.

in reply to larry_dammit

I worked in health care for 26 years. The biggest swamp is the insurance companies.

larry_dammit profile image
larry_dammit in reply to

I’m confused. Are you saying that the insurance company’s drive the prices of American drugs up way past what they sell for overseas

in reply to

Exactly what did you do in the Healthcare field for 26 years?

spencoid2 profile image
spencoid2

the asshole congress both elephants and asses are likely to strip out negotiation of drug prices for medicare from the big bill they are fighting about. i doubt any of them would listen praying is as likely to get it done.

austinsurvivor profile image
austinsurvivor

My Lu177 treatment in Germany was 12,000 euros. Just had an appointment with MSK and doc stated that price, when available in US, will be significantly higher if paying out of pocket. US drug policy is criminal and Novartis is buying up all PCa treatment drugs to make themselves a monopoly. Luckily, I have the means to pay for treatment overseas, but many men do not and insurance will not be paying if you're PCa is hormone sensitive. 😡

Ian99 profile image
Ian99 in reply to austinsurvivor

Was one session enough to bring PSA down ? Any side effects?

slpdvmmd profile image
slpdvmmd in reply to Ian99

Not sure really addressed to me. But after one infusion of Lutetium and Actinium at Heidelberg on July 19 in Sept my PSA was 0.018 ng/ml. Getting checked again next week. No guarantees with any treatment is my impression so will just continue to live PSA to PSA.

Ian99 profile image
Ian99 in reply to slpdvmmd

Thanks for the reply. Am looking to have AC-225 included to mitigate damage to salivary / tear glands. Good luck with your treatment.

austinsurvivor profile image
austinsurvivor in reply to Ian99

After my first treatment, PSA went from 0.6 to 0.3, then slowly rose again. After second, PSA flatlined only 1 month, then started increasing rapidly. I was forced to go back on ADT. Didn't get any explanation from my doctor in Germany as to why it I didn't respond as post injection scans showed high uptake.

j-o-h-n profile image
j-o-h-n

Easy Fix......Substitute our medical expenditures for our climate change expenditures..

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/01/2021 8:18 PM DST

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