Question:
Here's a copy of a column from the Newark Star-Ledger about a young man whose insurance company is refusing to authorize Remicade to treat a form of sarcoid uveitis, which according the column, is a juvenile rheumatoid arthritis that can result in permanent blindness. Their reason for the denial? Remicade is not an FDA approved treatment for sarcoid uveitis! :eek: :( :mad:
» More From The Star-Ledger
A mother's fervent appeal: 'How can they let my boy go blind?'
Thursday, March 10, 2005
Penny Register paces around the living room of her house in Newark like -- like, well, what she is: A mother fretting about her sick child.
"My son is going blind and this insurance company is just trying to save money," she says. "I can't deal with that. Who could deal with that?"
Her husband, Luther, is as concerned but less obviously agitated.
"We have insurance," says Luther, putting the pieces together one more time for himself, as if logic plus repetition equaled persuasion. "The insurance covers prescriptions. The doctor prescribed it. So why won't the insurance company pay it?"
On the wall behind them, at once both a family shrine and, in a way, a stage prop for this scene, are a collection of trophies and, in a frame, their son's basketball jersey from Bloomfield Tech. Lamar Register, who turns 19 next week, was a star there last year and, now after graduation, he is a rising star at the County College of Morris.
Lamar hopes to play basketball at one of the big hoops colleges after his two years in a county school.
Unless, of course, he goes blind.
Blind from a condition known as sarcoid uveitis that has plagued his eyes since he was 10 years old. Or from the medication he does take, and is approved and paid for by Aetna, his insurance company, that increases the pressure inside his eyes and threatens his vision with glaucoma.
"The medication he takes now does control his condition somewhat," explains Elizabeth Chalom, a pediatric rheumatologist at Saint Barnabas Medical Center in Livingston. "But it hasn't eliminated it. The continued use of those medications has possibly serious, long-term side effects, including blindness."
Sarcoid uveitis is a form of juvenile rheumatoid arthritis, about 10 times more common among African-Americans than among members of other races. In some cases, it goes away after a brief period of treatment; in others, it doesn't. With Lamar, it hasn't. And, without medication, his eyes swell and hurt and he has difficulty seeing.
But with continued use of that medication, pressure inside his eyes could build until his sight is limited or even destroyed.
In those circumstances, Chalom says, the treatment of choice among doctors throughout the country is Remicade, a drug usually prescribed for rheumatoid arthritis and Crohn's disease.
Aetna won't pay for this use of Remicade. The company's medical director, A.R. Nourizadeh, wrote to Chalom that Remicade's use for sarcoid uveitis is "investigational." It is an "off-the-label" use, not formally approved by the Food and Drug Administration. The company has denied an appeal of Nourizadeh's decision.
"But its use for uveitis is in the literature, you can look it up," Chalom says. "And every ophthalmologist and rheumatologist I know uses it when the first line of medication doesn't work."
But it costs $1,200 for a monthly dose.
"That's the reason," says Chalom. "The cost. No matter what the insurance company is saying, that's the real reason."
Walter Cherniak, an Aetna spokesman, says there is not yet enough research for Aetna to accept this use of Remicade, but adds that the family might be eligible for "an expedited appeal because of the possible consequences to Lamar."
Chalom says she has asked what she is supposed to do.
"I tell them I can't continue the medication he's on now, but they won't approve the medication he needs, so I can't change it. I say, 'OK, you tell me what to do,' and they say, 'Sorry, it's not our problem.'"
But it is the Registers' problem.
"It's hard for me to think of anything else," says Penny, who drives a bus for patients at the Veterans Administration Hospital in East Orange. "I'm just so upset. How can they let my boy go blind?"
Luther, a maintenance supervisor for the Newark public schools, says the family can't afford the sticker price of the medication.
"But I've got good insurance, good benefits with the board. I don't understand why they won't pay."
Bob Braun's columns appear Monday and Thursday. He can be reached at (973) 392-4281 or at rjbraun@webspan.net.
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Copyright 2005 The Star-Ledger. Used by NJ.com with permission. Source: http://www.nj.com/columns/ledger/br...36857276370.xml
Thanks for sharing this stroy, Mike... great example of fighting the p, er sv.
I sure hope Lamar gets the Remicade after this.
The state of healthcare and the insurance/doc/pharmacutical/legislative racket in this country ... not to mention the over one million Americans without insurance... :mad:.
Mike,
I'm so sorry to hear about this boy not being able to get the medicene he needs. When I was reading the article it said something about using Remicade "off label" Would that mean that he could get it off label without the insurance company or does that mean he has to pay for the Remicade at that high price?
Would it be possible for a rheumatogologist or optomologist to have him in a test study group for this medicene and condiotion, if it's not covered by the FDA yet?
He doesn't live very far from me. Newark is about 10-15 miles east from where I live. Would it help if he had a different doctor or one thar could get him in a clinical study?
I really feel bad for them and wish something could be done!!
Sandy
Once more I will stress we need to put medicine back into the hands where it belongs. And that is NOT the insurance companies!!!!!!!!!!!!!
Annie
Hi Sandy,
Some insurance companies will pay for medications, such as Remicade, to treat diseases for which it's not yet approved. Others, say "it's not approved for this disease so we won't pay for it." A lot of people wind up paying for the treatment themselves. Depending on the medication, this can be very expensive and beyond the reach of most people. (The columnist who wrote this article often writes about fund raisers being held -- say by a local volunteer fire department -- to raise funds to cover medical expenses for someone in the community who has a serious medical problem and either has no insurance or has an insurance company that is refusing to pay for a treatment.)
It might be helpful if this family can get into a clinical trial for Remicade. The clinical trial would have to be an "open" study so the Lamar could be assured of getting the medication he needs. (A double blind study, for example, could result in him getting a placebo which could do more harm then good. Shawn (screen name: polo123) participated in a double blind study for Remicade for his psoriasis. His psoriasis came back with a vengeance towards the end of the study and his doctor speculated that was because he was on a placebo.)
I didn't realize that there was a Newark, NY. Lamar and his family live near Newark, NJ. There are some wonderful research facilities both here and in New York City, which is only about a half hour from Newark. There are also wonderful research facilities in Philadelphia (about an hour and half from Newark) and in Baltimore (about three hours from Newark) so that's an option that the family should pursue.
I was going to e-mail the columinst and suggest that Lamar and his family look into www.needymeds.com and some of the other assistance programs that have been mentioned on this Board. I'm also going to suggest that the family consider an "open" clinical trail. Thanks for giving me the idea! :)
Mike
Thanks Mike for letting me know about the differences in off label and what the insurances would or would not pay for.
I guess I didn't think of Newark, NJ at first, because of Newark NY and some off the names in the article seemed to be familiar aroiund here. I'm glad he's near a large city for extra help. The idea of a fund raiser is really good. Alot of people around here have helped others with putting on fund raisers.
Glad you are e-mailing the reporter and hope maybe the idea of a clinical study might help. Definitely not for a placebo though.
Sandy
thank you mike for sharing that. it was intersting see how ins works.
Shame on Aetna!
» More From The Star-Ledger
A mother's fervent appeal: 'How can they let my boy go blind?'
Thursday, March 10, 2005
Penny Register paces around the living room of her house in Newark like -- like, well, what she is: A mother fretting about her sick child.
"My son is going blind and this insurance company is just trying to save money," she says. "I can't deal with that. Who could deal with that?"
Her husband, Luther, is as concerned but less obviously agitated.
"We have insurance," says Luther, putting the pieces together one more time for himself, as if logic plus repetition equaled persuasion. "The insurance covers prescriptions. The doctor prescribed it. So why won't the insurance company pay it?"
On the wall behind them, at once both a family shrine and, in a way, a stage prop for this scene, are a collection of trophies and, in a frame, their son's basketball jersey from Bloomfield Tech. Lamar Register, who turns 19 next week, was a star there last year and, now after graduation, he is a rising star at the County College of Morris.
Lamar hopes to play basketball at one of the big hoops colleges after his two years in a county school.
Unless, of course, he goes blind.
Blind from a condition known as sarcoid uveitis that has plagued his eyes since he was 10 years old. Or from the medication he does take, and is approved and paid for by Aetna, his insurance company, that increases the pressure inside his eyes and threatens his vision with glaucoma.
"The medication he takes now does control his condition somewhat," explains Elizabeth Chalom, a pediatric rheumatologist at Saint Barnabas Medical Center in Livingston. "But it hasn't eliminated it. The continued use of those medications has possibly serious, long-term side effects, including blindness."
Sarcoid uveitis is a form of juvenile rheumatoid arthritis, about 10 times more common among African-Americans than among members of other races. In some cases, it goes away after a brief period of treatment; in others, it doesn't. With Lamar, it hasn't. And, without medication, his eyes swell and hurt and he has difficulty seeing.
But with continued use of that medication, pressure inside his eyes could build until his sight is limited or even destroyed.
In those circumstances, Chalom says, the treatment of choice among doctors throughout the country is Remicade, a drug usually prescribed for rheumatoid arthritis and Crohn's disease.
Aetna won't pay for this use of Remicade. The company's medical director, A.R. Nourizadeh, wrote to Chalom that Remicade's use for sarcoid uveitis is "investigational." It is an "off-the-label" use, not formally approved by the Food and Drug Administration. The company has denied an appeal of Nourizadeh's decision.
"But its use for uveitis is in the literature, you can look it up," Chalom says. "And every ophthalmologist and rheumatologist I know uses it when the first line of medication doesn't work."
But it costs $1,200 for a monthly dose.
"That's the reason," says Chalom. "The cost. No matter what the insurance company is saying, that's the real reason."
Walter Cherniak, an Aetna spokesman, says there is not yet enough research for Aetna to accept this use of Remicade, but adds that the family might be eligible for "an expedited appeal because of the possible consequences to Lamar."
Chalom says she has asked what she is supposed to do.
"I tell them I can't continue the medication he's on now, but they won't approve the medication he needs, so I can't change it. I say, 'OK, you tell me what to do,' and they say, 'Sorry, it's not our problem.'"
But it is the Registers' problem.
"It's hard for me to think of anything else," says Penny, who drives a bus for patients at the Veterans Administration Hospital in East Orange. "I'm just so upset. How can they let my boy go blind?"
Luther, a maintenance supervisor for the Newark public schools, says the family can't afford the sticker price of the medication.
"But I've got good insurance, good benefits with the board. I don't understand why they won't pay."
Bob Braun's columns appear Monday and Thursday. He can be reached at (973) 392-4281 or at rjbraun@webspan.net.
» Send This Page | » Print This Page
Copyright 2005 The Star-Ledger. Used by NJ.com with permission. Source: http://www.nj.com/columns/ledger/br...36857276370.xml
Answers:
Thanks for sharing this stroy, Mike... great example of fighting the p, er sv.
I sure hope Lamar gets the Remicade after this.
The state of healthcare and the insurance/doc/pharmacutical/legislative racket in this country ... not to mention the over one million Americans without insurance... :mad:.
Answers:
Mike,
I'm so sorry to hear about this boy not being able to get the medicene he needs. When I was reading the article it said something about using Remicade "off label" Would that mean that he could get it off label without the insurance company or does that mean he has to pay for the Remicade at that high price?
Would it be possible for a rheumatogologist or optomologist to have him in a test study group for this medicene and condiotion, if it's not covered by the FDA yet?
He doesn't live very far from me. Newark is about 10-15 miles east from where I live. Would it help if he had a different doctor or one thar could get him in a clinical study?
I really feel bad for them and wish something could be done!!
Sandy
Answers:
Once more I will stress we need to put medicine back into the hands where it belongs. And that is NOT the insurance companies!!!!!!!!!!!!!
Annie
Answers:
Hi Sandy,
Some insurance companies will pay for medications, such as Remicade, to treat diseases for which it's not yet approved. Others, say "it's not approved for this disease so we won't pay for it." A lot of people wind up paying for the treatment themselves. Depending on the medication, this can be very expensive and beyond the reach of most people. (The columnist who wrote this article often writes about fund raisers being held -- say by a local volunteer fire department -- to raise funds to cover medical expenses for someone in the community who has a serious medical problem and either has no insurance or has an insurance company that is refusing to pay for a treatment.)
It might be helpful if this family can get into a clinical trial for Remicade. The clinical trial would have to be an "open" study so the Lamar could be assured of getting the medication he needs. (A double blind study, for example, could result in him getting a placebo which could do more harm then good. Shawn (screen name: polo123) participated in a double blind study for Remicade for his psoriasis. His psoriasis came back with a vengeance towards the end of the study and his doctor speculated that was because he was on a placebo.)
I didn't realize that there was a Newark, NY. Lamar and his family live near Newark, NJ. There are some wonderful research facilities both here and in New York City, which is only about a half hour from Newark. There are also wonderful research facilities in Philadelphia (about an hour and half from Newark) and in Baltimore (about three hours from Newark) so that's an option that the family should pursue.
I was going to e-mail the columinst and suggest that Lamar and his family look into www.needymeds.com and some of the other assistance programs that have been mentioned on this Board. I'm also going to suggest that the family consider an "open" clinical trail. Thanks for giving me the idea! :)
Mike
Answers:
Thanks Mike for letting me know about the differences in off label and what the insurances would or would not pay for.
I guess I didn't think of Newark, NJ at first, because of Newark NY and some off the names in the article seemed to be familiar aroiund here. I'm glad he's near a large city for extra help. The idea of a fund raiser is really good. Alot of people around here have helped others with putting on fund raisers.
Glad you are e-mailing the reporter and hope maybe the idea of a clinical study might help. Definitely not for a placebo though.
Sandy
Answers:
thank you mike for sharing that. it was intersting see how ins works.
Answers:
Shame on Aetna!
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