TODAY   |  July 16, 2013

Rossen Reports: Man fights insurer for life-saving drug

Kevin Dwyer and his sister Martha Weber both have the same strain of cystic fibrosis, the same insurance company, and the same doctor, who requested they each be given a potentially life-saving drug. But in a stunning twist, only Martha was approved. NBC’s Jeff Rossen reports.

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>> story might make you angry. today national investigative correspondence jeff rossen has details on this. good morning to you.

>> reporter: good morning. we always hear horror stories about health insurance companies denying claims but some experts say this case could take the cake. you're about to meet a man who is dying. there's a drug out there on the market that could literally save his life but he has been battling his health insurance company for more than a year to get it and now a new development in this case that no one saw coming. kevin can't breathe. he can't even sleep without choking. his condition so serious kevin 's new wife has to help clear his lungs every day.

>> what are you afraid of.

>> of him dying.

>> i didn't think this would come to this this fast. but it's come down to fighting for my life.

>> kevin has cystic fibrosis , a deadly disease clogging the lungs causing dangerous infections, even internal bleeding . the average life span of a patient only 37 years old. kevin is 40.

>> i'm suffocating to death very, very slowly.

>> because your airways are closing.

>> and it's getting worse. rapidly.

>> reporter: so why is his sister martha who has the same exact disease doing so well? her lung function is stable, even improving.

>> i feel able to hope for the future in a way that i never could before.

>> that's a big deal .

>> it's everything, yeah.

>> reporter: and she credits this little pill for all of it. a new drug called kalydeco, slowing the disease in some patience and ideally extending their lives. but it's expensive. $25,000 a month. so martha and kevin , brother and sister, asked their insurance to cover it. they have the same insurance company , united healthcare . they have the same mutation of cf. they see the same doctor who wrote the same letter to united that both will likely benefit from treatment with kalydeco but in a stunning twist, martha was approved and kevin was denied.

>> it crushed me. i was devastated. i was baffled.

>> have you said to the reviewing company you already approved my sister? what do you mean you're denying me.

>> yeah that was part of my appeal. i sent in a copy of my sister's review. i let them know you already approved this.

>> what was the response.

>> denied.

>> reporter: in fact, kevin was denied four times. the company's reason, kalydeco is not fda approved for his mutation but remember martha has the same mutation and she got approved. her reviewer saying the drug is medically necessary while kevin 's reviewer said not medically necessary.

>> it's too random. it can't be like russian roulette .

>> reporter: healthcare advocates say the system is broken.

>> there needs to be more transparency, more accountability and it shouldn't be luck of the draw .

>> reporter: as now time may be running out. here was kevin two years ago, a model of fitness. today, he can barely make it up a flight of stairs.

>> i want to live to the end with him and i certainly don't want him to leave me.

>> if i don't get this medication, i don't what other options i would have. this is life and death . it's completely life and death .

>> reporter: some of the bravest people i know . kevin his wife katie and sister martha joining us live this morning. they're here on the sofa because we have a big development to share in this case. we called united healthcare for our story. we always do to get a comment on these things and we got action. united has done a complete reversal and has just approved kevin 's claim because of the quote, unique circumstances of his case. so matt, he is finally getting the drug that he has worked so hard to get and that's great news.

>> logic finally in what seemed to be a completely illogical scenario. what's your reaction first, kevin .

>> i'm ecstatic obviously and big sense of relief. this was a long stressful battle. and just to be able to finally say that and know that i'm going to get this drug.

>> when i read about this story i could picture hundreds of thousands of people sitting at home getting angry. millions maybe. people who probably have fought their own insurance companies over situations like this. i mean, when you go back to that original phone call you got saying you were denied, how did you react to that?

>> there was a moment after i hung up where i sat stunned in silence and then i just cried. all of these emotions, you know, joy, relief came out. and, you know, this was a lot of people, this was a big effort. there was a lot of thanks from, you know, david ratner, senator squadrons office, community health advocates. these two ladies here and of course jeff and the producer robert powell . huge thanks to you guys.

>> of course.

>> wouldn't have been without you.

>> what should people know who are in a dispute with their insurance company , what advice would you offer martha ?

>> just keep fighting. it took so much work. it took -- we did so much research before we even submitted the first claim. and we knew that this drug would help us and so -- and especially when i got the drug and started taking it and knew how much better i felt, kevin had to keep fighting.

>> have you started taking? -- when will you be able to start the drug.

>> tomorrow.

>> tomorrow comes in the mail.

>> it started working for you in two weeks.

>> two weeks i had noticeable improvement in my lung function but within days he'll feel a difference in the way he can clear his lungs and the energy that he has. he's going to feel it right away.

>> and must be an enormous relief for you as well.

>> huge, huge relief. when we received the call that kevin was going to be getting this drug, many of the fears that i had for our future were lifted a great deal and i feel as though now we can really start getting excited about our future and planning.

>> keep us posted, please.

>> oh yeah.

>> let us know how you're doing.

>> a lot of people are watching this saying i'm fighting my health insurance company too. we have a list state by state of what you can do on our website go to the rossen report section. in most states there's a healthcare advocate that will help you fight your legal battles against these health insurance companies.

>> thank you all. good luck.