WE NEED A NON-PROFIT ADVOCACY GROUP W... - Advanced Prostate...

Advanced Prostate Cancer
10,568 members12,611 posts

WE NEED A NON-PROFIT ADVOCACY GROUP WITH TEETH!

dmt1121
dmt1121

After being turned down twice for the Axumin scan after BCR for pre-authorization at the peer-to-peer review level with my MO and the head of the OHSU Knight Prostate Cancer Center my docs and I are fuming! I have called other prostate cancer oncology groups who have had the same experience. My insurance company is Providence Health Plans.

They said they flat out won't cover it, even though it's FDA approved specifically for this condition. They won't even cover PET scans at all for prostate cancer. They consider it an inappropriate diagnostic tool. This is approved by the FDA, NCCN Guidelines for PET scan for suspected BCR and others.

This is true of other insurance companies as well and will continue to be more common as new diagnostics and treatment modalities are approved.

I have come to believe that patients need a non-profit advocacy group with the ability to take legal action against the insurance companies, if needed. Is there such a group? Patients with many conditions fall in these gaps without recourse.

Pitchforks and torches time!

20 Replies
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It's the Golden Rule. "He Who Has The Gold Makes The Rules!" If the patent holders of the Axumin Scan want their scan used more widely they will have to lower the price to compete with the scans insurance companies are willing to pay for...

dmt1121
dmt1121
in reply to Fairwind

Perhaps you are right in the sense that a decision to offer or withhold treatment should not be made based on cost. This is especially true when the insurance company is willing to to pay nothing for a treatment that is widely accepted and necessary. I am willing to pay my share of the $8,500 it costs but they won't even pay the PET scan portion. The F18 tracer is $4,000 of that amount. When I think of what new drugs that come to market cost, this amount does not seem to me to be out of line. In fact, it seems a bargain by comparison, especially given the price breaks we all know that insurance companies get that we don't.

The most basic problem with our "health care system" is that it allows large national and multinational companies to set prices (drug and diagnostics companies) and to weigh the value of a patient's treatment against the profitability of providing it (insurance companies). After everyone gets "their cut" only the wealthy and perhaps those on medicare can pay for these new treatments (per your statement above). It is an inherently disfunctional system.... if we (all Americans) truly are to receive health care based on need and not greed.

Your insurance company is a disgrace. PET with Axumin is a diagnostic tool that gives patients and their medical team information...valuable, actionable information. My RO today had prints from my PET with Axumin and showed me exactly where the mets are and how much field he was planning to target compared with what he did in 2012. So sorry for your situation with that miserable company.

dmt1121

What you are talking about takes a lot of selfless work and dedication to bring about.

Are you sure you are up for it?

dmt1121
dmt1121
in reply to cesanon

Were you BCR only or BCR and castrate resistant at that time? Other details about what your condition was and how Axumin changed your treatment plan would be very helpful to know.

Thanks!

Total BS !!! Same happened to me over a year ago . Cigna refused to pay for the axumin scan .

I had to pay out of pocket - cash I really didn’t have , and it changed my whole treatment plan .

Shameful that they won’t even pay for the “value” of the lesser scan .

Sorry to hear and best if luck to you . Keep us posted !

It certainly would take more than just me. It is an idea that is a step along the way to a paradigm shift in the way patient and insurance companies interact. If there were no non-profits fighting for justice in other arenas, there would be a lot more injustice. Health care injustice is no different. As patients (consumers of health care services), we are disparate individuals who are plagued by a system that intentionally separates us into groups, based on our type of policy (commercial, individual, etc.), our risk group (age, health conditions, etc.) that all follow actuarial charts and not anyone's true welfare. Our system is about profit, not health care.

When we become ill, we, our families and our doctors are our only advocates and allies.

The drug and insurance companies essentially divide and conquer. Acting as a group, we wield power and a seat at the table. A non-profit advocacy group is an adjunct to what we have now, instead of a more radical paradigm shift that would never see the light of day.

It is an idea that, if people consider valuable to them, will require investment of time and money by many. So the answer to your question is I don't know if or where it goes from here but it may be worth a try on behalf of millions of "health care consumers".

cesanon
cesanon
in reply to dmt1121

The main problem is the rules set up by the politicians we elect.

To change things you have to vote on a single issue.

The problem is that about 2/3 of old white men compulsively vote for a particular flavor of politicians who

1. Basically want to push everyone into out of pocket private pay, and

2. Who's healthcare plan has been mockingly described as "don't get sick, and if you do, die quickly"

We have met the enemy and he is us

HiddenThis reply has been deleted
cesanon
cesanon
in reply to Hidden

1. I am not a moron. It's been tested. Assuming you are above average intelligence, it is still statistically likely that I am smarter than you, and not by a little.

2. Here is the 2016 exit polling by race and by age.

cnn.com/election/2016/resul...

3. Opposing Facts, please.

4. I recommend you attack the argument, not the person. Ad hominem attacks imply weakness in the position for which they are intended to support.

Thank you

If you want to proceed with ad-hominem attacks, please take them to private messaging and avoid spamming this thread with your off-topic tantrum. Thank you in advance.

I think the political rhetoric is best saved for other forums Cesanon. I know you mean well but so do a lot of us “old white men”. Strange how things are today. It’s ok to attack people based upon their race if they are white but bigoted and racist to do so for any other race. We hear enough of that crap during the rest of our day. Let’s try and keep it out of this valuable forum.

Schwah

j-o-h-n
j-o-h-n
in reply to Schwah

This old white man agrees... Debating politics belongs at the family Thanksgiving day dinner where the carving knife and fork is readily available.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/07/2018 5:08 PM EST

A day of infamy.

The main problem is the rules set up by the politicians we elect.

To change things you have to vote on a single issue.

The problem is that about 2/3 of old men compulsively vote for a particular flavor of politicians who

1. Basically want to push everyone into out of pocket private pay, and

2. Who's healthcare plan has been mockingly described as "don't get sick, and if you do, die quickly"

We have met the enemy and he is us

monte1111
monte1111
in reply to George71

Well, i am 2/3 of an old man and all of the politicians seem to be the same flavor.

The real cost should be around $3500 , thats what I negotiated for mine last year.

Tars and feathers too...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/07/2018 4:58 PM EST

A day of infamy.

Old(ish) white woman here. I agree with George. It has SO MUCH to do with who we elect. Nobody should die for lack of medical care. Unfortunately, as you'll see on this forum and others, there are lots and lots of folks struggling (and often failing) to pay for treatment. Not 'deadbeats' who have never worked, or paid their own way, but hard-working, tax-paying, salt of the earth, American Dream types who had the poor judgment to get sick. After all, it is illegal for Medicare to negotiate drug prices. We're the only industrialized nation in the world who does not negotiate tax payer funded drug prices, and as a result, we pay the highest prices. (rant over).

While an advocacy group might not be a bad idea, if we'd all call our representatives and push for less of a profit motive, and more inclusion in our medical care system, perhaps they'd listen? Those folks are already being paid to be our advocates.

Though a bit heated, I am glad to have stirred some dialogue about a topic that touches most men on this forum. I think everyone has a point to make and that politics and their related priorities for budgets does impact all our lives. This doesn't mean we don't fund the military adequately so we can have free health care, just that we are rational about what are America's biggest challenges and how we arrive at a compromise that is reasonable for funding. I think that our priorities as citizens and people with families is very different than those of our politicians and the large military, pharmaceutical and multinational corporations that fund their re-election campaigns. I will leave it there. Please continue this healthy debate....maybe something good will come of it.

President Trump and Congress want to give insurers more rights to direct the drugs you use in six different categories, including cancer. You can be a nonprofit advocacy group of one and write or call your Congressional reps. God helps the cancer patient who helps himself.

dmt1121
dmt1121
in reply to Mkeman

I believe you are correct..... to a point. We all must do all that we can to move the ball forward (though it may be solid steel and attached to one leg). Many voices are worth more than one and the fight we face (as you point out) is not just against device manufacturers and insurance companies but a governance system built on lobbyists that can pay one US representative more than I make in a year or 4 years. This diminishes every other voice, unless 100, 1,000 or 10,000 other constituents protest against the system to counter the lobbyists.

Our system of government was founded on equal representation. This does not sound equal to me and this is what makes the battle so monumental. Every other western civilized country has some form of guaranteed health care because it is a part of the public contract and for the public good. Perhaps the US will come up with a unique hybrid solution that requires individual contributions for health care coverage and a public guaranty (i.e social security and medicare) . It is time for us to band together to fix the health care system (including mental health) because anyone can get sick, due at least in part to environmental exposure to the very products and pollutants made by the companies fighting to have their corporate taxes lowered regulations of their manufacturing practices lifted.

It will mean taking personal responsibility for our health, as well as the majority of people in this country insisting in a serious way that we put people over profits. That just means that certain industries that are necessities are regulated and everyone can get the care they need and pay whatever they can toward it through insurance and/or their own money.....without bankrupting them in the process.

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