Sadly true for some on this site - Advanced Prostate...

Advanced Prostate Cancer

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Sadly true for some on this site

DenDoc profile image
53 Replies

The stories are everywhere but mostly on cancer sites.☹️

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DenDoc profile image
DenDoc
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53 Replies
Here4Dad profile image
Here4Dad

Sad but true 😥

Shooter1 profile image
Shooter1

We do seem to have the most expensive drugs. Without the VA picking up my drug costs, I could make it 36 mo. before having to sell our home. Already sold mt. cabin to survive treatment time not working.

in reply to Shooter1

So happy to have the VA and be able to afford my Zytiga.

SsgCulldelight profile image
SsgCulldelight in reply to

Yes sir thank toy for your sacrifice my friend.

SsgCulldelight profile image
SsgCulldelight in reply to Shooter1

Facts my guy I served because I love my freedom and to protect my family, the benefits are possibly one of the biggest perks of being a vet. Thank you for your sacrifice sir.

cujoe profile image
cujoe

DenDoc, If you use a US-based spell checker and type "prescription drug prices" it automatically inserts the "high" prefix for you. Here is a recent story from MedPageToday (how about a 97,000% increase?!?) that at least indicates the Justice Dept. is MAYBE going to do something positive in at least one instance:

Whistleblowers: Company at heart of 97,000% drug price hike bribed doctors to boost sales

cnn.com/2019/04/30/health/m...

And one of my all-time favs that I've posted before about the money-grubbing methods of even the most reputable drug companies:

Lucentis Vs. Avastin: A Macular Degeneration Treatment Controversy

allaboutvision.com/conditio...

Just another reason why we need to be "nice" to each other on this forum. Be Well - cujoe

Bluebird11 profile image
Bluebird11 in reply to cujoe

Yes it is important for us to be kind. There’s a lot we have to deal with. I want to do my part in making this a kinder gentler world. I don’t know you all, but I certainly know more than I wanted to know about the situation we find ourselves in and along with all we go through, I want to say we are amazing human beings changing the face of this challenge we share. Much respect and love, brothers and sisters.

SsgCulldelight profile image
SsgCulldelight in reply to Bluebird11

Yes sir thank you so much for your contribution to the positive vibe bro.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to cujoe

Thank you for saying that! Kindness (love) wins. Every. Time.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to cujoe

Agree! Love wins. Always.

So grateful for all the support and information on this site. And kindness.

in reply to cujoe

Where’s cujoe?

DeanNelson profile image
DeanNelson

I went thru 80k in 3 months WITH insurance,

I'd be dead if it were not for the VA... Our healthcare system is on a oneway track to collapse. I was a nurse for 15 years, then I went into healthcare IT for last 12 years, implementing electronic medical records (Epic). Its just a matter of time...

Longterm101 profile image
Longterm101 in reply to DeanNelson

J&J has for years held a dominant position in the prostate cancer therapy market with Zytiga (abiraterone acetate). In 2018 alone the drug raked in $3.5 billion for the big pharma, up nearly 40% from the year prior.

DeanNelson profile image
DeanNelson in reply to Longterm101

I can completely understand rewarding a company for making a power drugs such as Zytiga..

CEO made in 2018

$1,642,308 Base Pay

$3,570,497 Bonus + Non-EquityIncentive Comp

$5,212,805 Total Cash Comp

$10,319,463Stock Award Value

$4,305,594 Option Award Value

$14,625,057 Total Equity

$259,710 Total Other

$20,097,572 Total Compensation

but what person needs 20 mil a year ( or 384,000.00 a week in pay?)

Longterm101 profile image
Longterm101 in reply to DeanNelson

Dean i agree!! I suggest we pay the CEO that finds the cure this kind of money!!

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to DeanNelson

We were living in the UK when my husband was diagnosed. (He's English) And were so grateful for that to be the beginning of our journey. We sought out expert opinions throughout the EU. Once we were back in the US and speaking to doctors who were a product of the system here, we realized that overall, and this is a generalization of course, but overall there was much more kindness and compassion which was evident in every interaction. But they are all a product of the system in which they "grow up" professionally. No system is perfect but would have to say that if I were diagnosed with any type of cancer, I would want to be in Germany.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to HOPEFULSPOUSE

I.E. more kindness and compassion in the EU systems. Being treated like a human being vs. a disease.

Currumpaw profile image
Currumpaw in reply to HOPEFULSPOUSE

Never consider hyperthermia which is a treatment the Germans have made popular for prostate cancer among others. I am on another site as well as HealthUnlocked. A member on that site and almost all--except for one--had recurrence of prostate cancer. I was considering it as a possible future treatment. I am grateful to him for relating his experience and how the others fared after hyperthermia.

SsgCulldelight profile image
SsgCulldelight in reply to DeanNelson

That's right dean my surgery with initial meds ran about 120k that was in 09, so ask the meds since then, I wouldn't even attempt to ag that up, thank you VA

in reply to DeanNelson

I too with insurance let myself get reemed financially . Still blue cross paid towards a mil for me my first two years . Thanks Bc .. as an insider you know the R.I.P. off . Beater than Zimbabway ..Peace Dean ..

Darryl profile image
DarrylPartner

bloomberg.com/news/articles...

cujoe profile image
cujoe

By the way, if anyone wants to see how much their doctors get from pharmaceutical companies, you can look here and get a general idea (the data is quite old and uses Medicare data for the period from 2009-2013):

Dollars for Docs

projects.propublica.org/doc...

They also have a surgeon scorecard that shows number of procedures and rates of complications for surgeons and consolidated info for hospitals for a limited number of major procedures like RP:

Surgeon Scorecard

projects.propublica.org/sur...

Be prepared to be surprised at what you find. Be Well - cujoe

teamkv profile image
teamkv

No wonder when I leave a doctors office I deal as though I just stepped off a used car sales lot. 🤬

kaptank profile image
kaptank in reply to teamkv

Time to get a new doctor.

in reply to teamkv

Same thing..

cesanon profile image
cesanon

Most of the pharma lobbying money goes to one party. It is the party that 2/3 of our demographic reliably votes for.

This is a political problem, with a political solution.

Please don't complain if you are voting for those who are the source of this problem.

COG1 profile image
COG1 in reply to cesanon

One (of many) reason that drug prices are so high in the US is the inexplicable law that prohibits Medicare from negotiating drug prices. It is actually illegal for the biggest publicly funded insurer to negotiate for better prices on drugs. Every single wealthy, industrialized nation in the world negotiates drug prices for their publicly funded healthcare agencies. This is one reason that medical costs in this nation are 2 1/2 times that of the costs in other 1st world countries (yet our outcomes lag behind). There have been several attempts to repeal this baffling law, but all have been blocked by one party.

As for the argument that lower prices would derail research and development, it's nonsense, since drug companies spend more on advertising than on R & D. Johnson & Johnson spent $17.5 Billion on sales and $8.2 Billion on research last year. If you're concerned about drug prices, call, write, visit your elected representatives (repeatedly) and demand that they repeal this law and stop putting the profits of drug companies over the welfare of their constituents. OK, I'll get off of my soapbox now.

cesanon profile image
cesanon in reply to COG1

Also, all medical costs are excluded from coverage of price discrimination laws.

That could be such an easy fix for a lot of health industry problems.

All we need is some politicians who care, and voters who will support them.

COG1 profile image
COG1 in reply to cesanon

We also need voters willing to hold their feet to the fire. So often, I have found that people complain, shake their head, but won't follow through. If everyone on this board contacted their representatives, and had their family and friends do the same, we might get some traction. Polls show that 92% of voters support repealing this law. If 92% of their constituents pushed for repeal, it could make a difference. They KNOW people will vote for "their party" regardless of what they do in office, because people don't pay attention. If your representative looked you in the eye and said "I don't care if you can't afford your meds, we aren't repealing a law that benefits my wealthy donors", you'd never vote for them again. By blocking the repeal of this, that's exactly what they said.

cesanon profile image
cesanon in reply to COG1

"There have been several attempts to repeal this baffling law, but all have been blocked by one party."

Yes, and that party forces voters to choose between religious, racial and 2nd amendment issues..... And healthcare.

COG1 profile image
COG1 in reply to cesanon

Yes...I used to fall for a lot of it (and voted accordingly). A lot of what has happened in the last few years seemed to not line up with my faith. Now I have three verses printed out, highlighted and attached to my wall by my computer screen. Matthew 22:36-40, Mark 12:28-33 and Romans 13: 9-10. They all say the MOST important commandment is to love God and LOVE PEOPLE. Not people you like, or people you agree with, or people who share your beliefs, or people who've done the "right things"...but all people. I've decided that whatever policy being proposed has to line up with that to have my support. Depriving anyone of healthcare, simply doesn't.

Sorry for getting off topic and "preachy".

in reply to COG1

Big pharma rules congress.. go figure ? $$$$$$$

cesanon profile image
cesanon in reply to

"Big pharma rules congress.. go figure ? $$$$$$$" Lulu700

Lulu700

The reason they rule congress is that we keep electing congress people who continue to permit them to purchase votes, regulations and even laws.

Both parties are enablers to some extent, but only one party is 100% dedicated to fighting for the right of corporations (and the wealthy) to vote with money. They have succeeded in installing a majority of Supreme Court Justices that will continue to protect the right of corporations (even foreign owned) to vote with money.

It is our voting patterns and loyalties to the wrong party that enable this to continue.

We are sort of getting the government and medical care we deserve. To change it, all we need to do is to change our voting patterns.

in reply to cesanon

I’m with you ...the people put these fine folks in Congress. Until people see the light nothing good will happen ... I’m happy that I m treated and surviving with the fallout . I’m appreciative of life not politics . “ If voting mattered ,they wouldn’t let us do it”. MT The two party system allows nothing in cooperation...but it might just be better than Kim Joon or most of the third world . Peace..

larry_dammit profile image
larry_dammit

I was so lucky that my wife purchased a great supplement and a cancer policy for me a few years ago,the $ 10 K a month for Xtandi would have crushed us by now. 33 months of it.

monte1111 profile image
monte1111 in reply to larry_dammit

Go Larry, Damn it, Go.

skateguy profile image
skateguy

Insurance is a tricky thing. I'm no expert. But if you have health insurance, you should call your insurance company and ask if they have a specialty pharmacy. A number of years, if I remember correctly, the MO facility would charge me $1,200 for a three month Lupron shot and $800.00 for the monthly Xgeva shot. These charges where beyond my budget, so I called a pharmacy to find out if there was a cheaper generic drug and they told me that I could get the same drug (Xgeva) for $50 with a prescription. I called my insurance company (BC/BS) and they explained that for specialty drugs, I could get them under my prescription benefits using their specialty pharmacy. Currently, through the specialty pharmacy I pay $50 for a month supply of Xtandi and $50 for a 28 day Lupron shot. The down side it some MO facilities will not allow you to bring your own drugs. I have only been turned away once and that was here in Virginia Beach, VA at Oncology Associates, for a Lupron shot and received some push back from others. But my friend is a nurse, and she gave me the Lupron shot. By the way, the Xgeva I mentioned above cost $50 through the pharmacy and my wife gave me the shot, and saved me a trip to the MO. I have been getting drugs from the specialty pharmacy for five or six years now, including chemotherapy drugs. I'm not a very valuable patient to the medical complex. :-) So, call your health insurance company and ask how you can get your drugs under your prescription benefits. I hope that helps someone to reduce their out of pocket expenses.

cesanon profile image
cesanon in reply to skateguy

According to GoodRx xgeva is about $2300 per dose without insurance picking up the tab. So the price you are paying sounds like a copay.

That's good, but not applicable to someone without the same insurance.

skateguy profile image
skateguy in reply to cesanon

That was my focus. If you have health insurance you can pay a higher amount if the cost of the drug is submitted under the health insurance benefits, versus under the prescription benefits. Of course, you have to have health insurance and if you do, call your health insurance company and find out if you can get drug XXXX for less money out-of-pocket with a prescription from your doctor.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to skateguy

We were shocked at the XGEVA price (although it turned out our insurance paid for all of it but we didn't know that would be the case at the time). So we contacted my husband's former MO in Toronto who offered to send it to us - for $300 US. So we mentioned that to the MO here and suddenly the price went way down - but at the end of the day insurance paid for it.

in reply to HOPEFULSPOUSE

It’s a Scam ..

Scorpio99 profile image
Scorpio99

In my case the Lupron I was getting injected every 90 days for 2 years was $350 until at the beginning of my 2nd year of treatment a large corporate clinic with 47 offices in California won the bid for my insurance company's oncology business and I was forced to stop seeing my doctor and get my Lupron shots from them. They tried to increase my co-pays by a factor of 10 to $1350 and I had to file a written complaint to my insurance company and demand a formal hearing to contest this outrage, at which time the corporate clinic agreed to charge me only $50 per injection just to shut me up.

tkalaf profile image
tkalaf

I've read all the above, but I can say that in my heart I would not wish this disease on anyone. Peace and Love to all whether rich or poor, greedy or giving, ...

I hope there is a cure soon!

j-o-h-n profile image
j-o-h-n in reply to tkalaf

AMEN....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/03/2019 6:43 PM DST

Gearhead profile image
Gearhead

One thing that would reduce drug costs at least a little bit: Ban direct-to-consumer advertising of prescription-only drugs. TV, print, and all other media. Current FDA rules have make the ads absolutely silly (tell me you've not laughed at or been puzzled by TV drug ads). Even with all these restrictions, drug companies spend more than $5 billion a year pitching prescription medications directly to consumers (LA Times, 20017). My guess is that about another $5B is wasted by folks responding to "ask your doctor if Expensify is right for you". You probably read of impending legislation requiring drug costs to be included in ads. I'm sure a few $100M is being spent arguing about that.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to Gearhead

Completely agree! That was Clinton's gift to us - that he allowed this. My uncle who was a DR was so upset in the aftermath of this. Said the patients started coming in demanding drugs they didn't need, didn't want to be examined, just given a script. He wouldn't do it but said many in his practice did - starting practicing what he called "economic medicine" - too afraid of the threat that the patient would go elsewhere if they didn't comply.

monte1111 profile image
monte1111

Exactly what I was going to say. You took my thunder. Advertising of drugs is stupid. Even with the qualification that they must list side effects. Only two countries allow this. The United States and New Zealand. The cartoon was laugh out loud funny. And very sad.

in reply to monte1111

Nothing worse than regular tv in Arizona . Every other commercial is for a drug . It downright offensive ...they hit the the elderly population with intent...why is it not illegal ? Lobbyist !

monte1111 profile image
monte1111 in reply to

Yeah. Only old people like the Nightly News on TV. It is all drug commercials. Some of which will scare the crap out of you. Young people are wrapped up in themselves. And that is the way it should be. We all enjoyed our youth. Remember all the crazy things you did? Keep that flaming star behind you. Enjoy.

in reply to monte1111

Hell yah monte . I lived it up ,more than most ,did some crazy fun stuff . I do tune in to the bad nightly news for some reason ?. Habit I guess? I’m a dreamer . My head in the clouds as much is as I can . We take the good with the bad in life.Especially our new way of life ..Youre a great dude .. ... thank you Monte ...

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to monte1111

When we were living in the UK - every time I went to a DR for any little thing (which was 4-5 times in 7 years) - I would find myself representing all Americans as the DR would warn me not to self diagnose and ask for something I didn't need. Actually when I went to an orthopedic surgeon re: hip issues - he practically yelled at me on the first visit before a scan had even been done "if you do need a hip replacement don't you dare start asking for the brand that Jimmy Connor advertises for - we don't work like that here - we give you what you need, not what you want"!

monte1111 profile image
monte1111 in reply to HOPEFULSPOUSE

That is so funny. And how often do we buy things we want and don't need? I have an Instant Pot sitting on my kitchen counter. It looks like a rocket ship. There is only one of me. All I wanted was a cup of rice. But I got a hell of a deal on it. Enjoy.

👏

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