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Anti-VEGF drugs and macular conditions

Can you tell me what is going on to expand the indications and approval of the anti-VEGF drugs so that there is full Medicare and insurance coverage. Lucentis and Macugen are only FDA-approved for wet AMD, yet these drugs are useful in many other retinal inflammatory conditions, often the only treatment available for these problems, yet insurance won't pay. Of course, they won't pay for Avastin at all and I understand the reason for that, since it would only hurt the profitability of Lucentis. What can possibly be the justification by the insurance companies to leave patients without coverage for Lucentis or Macugen, the only things that might help a variety of sight-threatening conditions?
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233488 tn?1310693103
MEDICAL PROFESSIONAL
This nation (USA) is going broke on all its spending. If you really think you can tax and spend TRILLIONS of dollars to pay for the toxic debt problems that Congress caused and still have money left over to pay for Medicare and Social Security for all the baby boomers then you are sadly misguided.

There is no reason to blame the insurance companies. It won't be long before the US Congress runs them out of business also.

JCH MD
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Avatar universal
My question did not relate to anything political. In fact, I do not have Medicare at all, but Blue Cross for which I work hard to pay the premiums. My point relates to the rationale or justification for not providing this specific coverage, ie.. why this and not something else.... What if they decided not to cover heart attacks or broken arms, or cancer chemotherapy and next month you had one of these problems. Imagine you had been paying premiums for 30 years and suddenly when you needed to use your insurance there was no coverage for your problem and you had to pay thousands to treat it yourself.. So, why are you directing your anger at me? What did I do? Do you know what reason is generally given by insurance for not providing coverage?
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Avatar universal
Usually when an ins co declines to pay for a procedure like you are referencing, the reason they give is that it is still considered experimental or they have a policy not to pay for drugs used "off label".  This can go on for years after FDA approval.  As far as I know, there is no regulation that forces ins co's to align their approved procedures with FDA approval or with the standard of medical care.  They often wait many years to begin paying for procedures, citing a desire to verify efficacy, etc.  It may not be right, but it's the standard it seems.  

This forces drug co's to either propose new and expensive clinical trials to prove that the drug is also effective in the off label instance, or just let it go:  let the dr's work with the drugs, let the dr's spread the word of off label success thru their own studies and publications, and in this way leave pt's to pay out of pocket.  You can do the math on what the drug co's choice will be.  Free marketing and research and a "thanks buddy" from the ins co.  This is where the drugs you ask about are now.  

Unfortunately dr's have absolutely no power in this scenario.  All they can do is let pt's know which tools they have in their toolboxes, which tools the ins will pay for, and do their best to work with their patients fiancially while trying to keep enough receipts coming in to pay their staff - many of whom are employed for the sole purpose of tracking all this financial hub-bub and to deal with ins co's - and keep the doors open.

That said, why not work with a dr who IS using avastin off label?  Ins won't pay as it is indeed being used off label, but that same is true for Macugen and Lucentis used for anything other than wet AMD.  Avastin is every bit as effective according to many drs and FAR less expensive as you seem to be aware.  If you are going to be out of pocket for treatment anyway, as your ins isn't paying for ANY drug being used off label, you might as well be out of pocket less for a treatment that many argue may even be more effective.  Avastin has been used with long enough success at this point that should my mom need off label suppressive therapy for a retinal condition I'd hope it was the dr's choice.

The same thing as the lucentis hoohah happened with visudyne.  It was already approved, labeled and used as a tumor treatment before an eye dr's mom said, hey - wouldn't this work for......?  A new study was implemented, and when visudyne came out labeled for wet AMD, it was astronomically more expensive than it had been when it came in the other vial for the other purpose.  Same drug.  Rediculous.

I think we are approaching a time of significant change in medical accessibility, cost, and coverage.  I don't know if any one on any side of any fence is going to be happy with whatever we end up with, but there is no question the entire industry from patients to providers to insurers are in crisis.  Something will have to give.  I just hope the change makers don't end up throwing out the baby with the bathwater.  

Change is only advantageous if it helps something and I have not heard anyone who has offered an alternative better than the mess we live with now.  And that mess is so multifaceted: litigation, insurance, R & D, the FDA itself, HIPPA, ADA, and other endless governmental regulations... it goes on and on.  

Everyone seems to think they know better than the drs what is best for their patients, and everyone has their hand in those dr's pockets.  They are squeezed between the cost of standard of care, ins co's who are slow or fail to pay,  and patients who are held hostage by finances and those same ins co's.

All the while patients are losing vision and the cost of their disability is conspicuously not part of anyone's equation.  The care and support of a legally blind patient is huge.  The epidemic of AMD is huge.  It's growing with the age of the enormous population bulge approaching their 60's now.  In the end, THIS is the bill that is going to come due in spades.  Ins cos would do well to listen.  They save money in the long run by treating patients now.  The burden of caring for an entire generation ( and the largest generation in history no less) of blind patients will be unbearable.  It's a swelling tide without precedent and no one but the drs seem concerned.  

You're right.  It's sad and frustrating and in some cases unconscionable, but change is going to be slow and painful.   The answer to your actual question - what is being done?  Essentially nothing.  No one but the doctors and patients are getting hurt.  The ins cos and drug cos have no motivation to do anything at all.  The inevitable change will come through some kind of government regulation and Lord save us from that.  Regulations are already at the very core of this whole pile.

Good luck in seeking treatment and coverage.  There are practices out there who will work with you.  Hang in there.
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233488 tn?1310693103
MEDICAL PROFESSIONAL
A final comment. I realize this is not a political forum but the question you asked involves politics. I was just in Washington DC for a week long health conference. The main drivers of the cost of medicine in the USA include: technology growth, the desire for one standard of care (everyone gets Lucentis or Avastin, MRIs, ICUs, maximum end of life care), the growth of the population, the aging of the population, the cost of "defensive medicine" to combat the sue-happy US cultrure, and the amount of care spent in the last year of life, and the "bureaucratic" costs of dealing with insurance companies, the state and local governments.

When health care is nationalized as many from the UK and Canada have attested here, services are denied, rationed and the waiting time is often horrendous. For example Ted Kennedy has a malignant brain tumor. He is being kept alive by a very expensive medicine that is best thing for that type of brain cancer. That medicine is not available in Canada, (a system that Ted thinks we should emulate). If a Canadian with a brain tumor comes to the USA for MRI, brain surgery or to get that medicine the powers that be in Canada are trying to make that person pay for ALL their care out of pocket in Canada (in other words they are kicked out of the system).

Physicians have no control of these. If fact in both Canada and the USA the programs assume the physician will work longer, work harder for less money and sued more often.

You never want to "dumb down" Medicine and make it unattractive to our brighest young men and women.

JCH MD
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Avatar universal
   Thank you both for your comments. Several points have been very helpful.
    It seems possible that if privately funded studies (universities, etc..) on the usefulness of anti-VEGF drugs in eye conditions other than wet AMD could be used by the makers of Lucentis and Macugen to seek FDA approval for more indications than just wet AMD, it would greatly benefit them by expanding their markets.(Especially Macugen, since they hold no financial interest in Avastin.) And regarding the issue of off-label use, I doubt there is much of an issue that arises around using intravitreal steroids off-label since they are so cheap. I don't recall a Blue Cross denial for the two Kenalog injections I have had.
   Another thought that comes to mind regards the pressure that can be applied by grass-roots organization. I know there are organizations of people with Macular Degeneration. I realize that the population with retina inflammation related to eye injury, trauma, uveitis, diabetes and other causes is not of a nature to organize since the causes and course of treatment vary. Yet, the Macular Degeneration organizations could go to bat for all these people.
   At some point, the retina specialists will get fed up. I have a great, caring doctor. He does use Avastin with me. I have had 12 treatments, the last 5 have been two weeks apart. Every time, Blue Cross is billed $550, they turn it down, and my doctor lets me pay $200 and he takes a loss. So, I pay $400 per month. I've been told there is no other treatment for my refractory CME, so I gladly pay it. But I feel it is wrong for Blue Cross to "play doctor" here. His waiting room is full of people waiting for Avastin for a variety of problems. What is the insurance companies' suggestion to treat our problems? Do they suggest to do nothing? If my problem continues to need treatment, I expect I will go through an appeal process with them.
   As regards the political issue, I am as big a believer in small government as they come. I am a big believer in the free market and less government intrusion in our lives.But this requires that people take responsibility, be informed and take action about things that affect their lives. I also know healthcare is unique. Technology has outpaced our ability to pay for what technology is available. And nobody can really pay for their own care for major illnesses and surgeries with the pricetag they carry. So there will necessarily be third parties involved. It is certain changes of some sort will come, but we need to make sure that the impact of political interests is minimized by grassroots involvement especially by those who are fiscally conservative to insure that medical decisions are made by doctors in concert with their patients based on sound judgements. And we need doctors who really care about people to go to bat for us.Now, more than ever. You know, doctors are people too. Doctors can experience pain, suffering, disability, loss of work from illness, catastrophic medical expenses or, yes, even loss of vision. But, sadly, as I have learned, until a person experiences these things, one can never truly understand or empathize with another.
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233488 tn?1310693103
MEDICAL PROFESSIONAL
Having spent 5 years caring for a father in law and 5 years my mother before they died and suffering through a 34 year old son in law dying with a brain tumor and some health problems of my own I understand and emphathize with you.  

For the record kenalog is dirt cheap to make and has been around for 30 years or more.

JCH MD
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Avatar universal
Interesting how there was a little contention at the beginning of this thread but in the end we each said:

Buttercup109:
"It is certain changes of some sort will come, but we need to make sure that the impact of political interests is minimized by grassroots involvement especially by those who are fiscally conservative to insure that medical decisions are made by doctors in concert with their patients based on sound judgements."

JCH MD:
"When health care is nationalized as many from the UK and Canada have attested here, services are denied, rationed and the waiting time is often horrendous........................Physicians have no control of these. If fact in both Canada and the USA the programs assume the physician will work longer, work harder for less money and sued more often."

Me:
"I think we are approaching a time of significant change in medical accessibility, cost, and coverage.  I don't know if any one on any side of any fence is going to be happy with whatever we end up with, but there is no question the entire industry from patients to providers to insurers are in crisis.  Something will have to give.  I just hope the change makers don't end up throwing out the baby with the bathwater."

Buttercup109:
Technology has outpaced our ability to pay for what technology is available. And nobody can really pay for their own care for major illnesses and surgeries with the pricetag they carry.

JCH MD:
"The main drivers of the cost of medicine in the USA include: technology growth, the desire for one standard of care (everyone gets Lucentis or Avastin, MRIs, ICUs, maximum end of life care), the growth of the population, the aging of the population, the cost of "defensive medicine" to combat the sue-happy US cultrure, and the amount of care spent in the last year of life, and the "bureaucratic" costs of dealing with insurance companies, the state and local governments.

Me:
And that mess is so multifaceted: litigation, insurance, R & D, the FDA itself, HIPPA, ADA, and other endless governmental regulations... it goes on and on.

Just an observation.... seems we all ended up on remotely the same page.  :)




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233488 tn?1310693103
MEDICAL PROFESSIONAL
Let's hope the rest of the country comes to the same conclusion.  The present administration has said the status quo remaining the same is not an option so things could get some better or a lot worse.

JCH MD
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