Mulcahy struggles with Medicare to cover expenses

By Mary Garrison
Tribune-Courier Reporter
mgarrison@tribunecourier.com

BENTON – Thirty-one-year-old Khayyam Mulcahy has spent the better part of his life fighting a war within his own body.

“When he was three years-old, he got walking pneumonia,” Mulcahy’s mother Joanna Mulcahy recalled. “I’d taken him to the doctor and they put him on medicine. He looked like he was getting better, at first.”

It was then, however, that Joanne began to notice changes within her young son.

“He started to cry whenever he had to use the restroom, and his stomach began to swell,” she said.

After Mulcahy’s navel began to extend, Joanna rushed her son to the hospital. Upon lengthy examination, it was determined that Mulcahy suffered from a defective urethral valve. More commonly found in boys, it’s a disorder in which a valve in the urinary tract locks up, preventing the flow of urine from exiting the body properly.

“It had backed up through his urinary tract and into his kidneys,” Joanna said. “By the time they got him in for emergency surgery, the right one had been destroyed, and the left one was reduced to functioning at about 60 percent.”

At that time, doctors removed Mulcahy’s no-longer-functioning right kidney, and over the course of a year, Mulcahy underwent a series of reconstructive surgeries to preserve the left.

For nearly 14 years, the procedure was effective.

However, when he was 17, Mulcahy encountered another obstacle with his health.

“I was diagnosed with high blood pressure,” Mulcahy said. “The doctor told me that if I couldn’t take the medication at the same time every single day, I was better off not to take it at all. It would do more harm than good. Being 17, well, it’s not always easy to do things at the same time everyday.”

Mulcahy opted not to take the medication, but did adhere to dietary and stress guidelines.

It wasn’t enough.

“I was at a friend’s house and came down with a terrible headache,” Mulcahy said. “I went to lay down for a bit, but nothing I did seemed to help.”

The headache continued for more than a day, and Mulcahy began to suspect something was very wrong.

“I started to drive myself to the hospital and passed out on the way,” Mulcahy said. “Fortunately, I hit a rumble strip on the road and it jarred me awake, but I had to make the rest of the trip with my head out of the car window to stay conscious.”

Mulcahy checked into St. Joseph’s Hospital in Memphis where he underwent testing.
“When it was all said and done, they told me I no longer had any kidney function. High blood pressure had taken my left one.”

At just 21 years old, physicians put a port in his chest, and Mulcahy began his first round of dialysis.

The process is a demanding one. Three times a week, Mulcahy is hooked up to a filtering device emmersed in a large volume of fluid. The device uses cellulose membranes to separate the components of the blood, and the fluid is a salt solution which actually removes those substances before pumping blood back in through the patient’s vein. In addition to the routine puncture wounds the treatment entails, patients must adhere to strict dietary guidelines.

“You don’t urinate anymore, so you have to watch how much fluid you take in,” Mulcahy explained. “If you drink too much, you could be in trouble. You have to watch your sodium intake, as well.

“You ache all the time,” Mulcahy went on to say. “Severe muscle cramps and migraines — it really takes a toll on your body. You’re left completely drained, and all you can really do is sleep all day once it’s over. You just feel rotten all the time.”

At the time he began treatment, Mulcahy was placed on the organ recipient’s list in search of a new kidney for transplant. He’d spent approximately four years on dialysis when doctors were able to find a suitable donor.

The transplant was successful, and Mulcahy was able to end dialysis. That is, until August of 2007.

Approximately one year before, Mulcahy developed Interstitial Nephritis, an allergic reaction in the transplanted kidney. He was treated and returned for routine visits, including trips to Lexington at the University of Kentucky Medical Center. However, the damage had already been done.

“My wife and I had gone on a little trip for our anniversary,” Mulcahy said. “When we got home, there was a message from Dr. McCulla’s office that said I needed to get in touch with them immediately.

“They brought me in that day and signed me in for dialysis. I had no kidney function.”

Mulcahy, once again, began a tri-weekly dialysis routine, and was placed on the transplant list at Vanderbilt Medical Center, only this time, they had hopes of a living donor.

On a few occasions, it appeared members of Mulcahy’s family might be viable donors, but complications arose, leaving him in limbo.

“I was on the transplant list for four years the first time, without any exceptions,” Mulcahy said. “Now, it’s just a needle in a haystack. There’s no telling how long I could be on it this time.”

With hope wearing thin, specialists at Vanderbilt have presented one last option in the form of a $10,000 injection known as Intravenous Immune Globulin Injection, or IVIG.

IVIG is used in treating various types of leukemia and autoimmune deficencies. According to an article published by 30-year veteran medical technologist Elaine Moore, the drug acts as an immunomodulator, which essentially balances the immune system, strengthening those that are too weak.

However, Moore said IVIG has shown success in neutralizing autoantibodies and toxins, as well as reducing the number of antigens and antibodies, thereby reducing activity in overactive immune systems.

Thus, it is commonly utilized in several off-label ailments, such as the situation faced by Mulcahy.

“Basically, they want to administer this drug to kill off the antibodies I’ve built up in my kidneys,” Mulcahy said. “Then, hopefully, I’ll be able to accept one from my mother.”

But everything comes with a price.

Because the drug is derived from human blood plasma taken from several donors, and the refining process takes approximately seven months before a usable product comes to fruition, it carries a hefty price tag.

“The first time I was quoted an estimate, I was told that shots were $30,000 a piece,” Mulcahy said. “I’ll need a minimum of two shots, possibly three.”

Mulcahy said through looking at different options, the family has finally gotten a quote through Humana, a division of Medicare that specializes in outpatient services and prescriptions, that would appear to be a more viable option.

“The final estimate we got was $10,000 a piece,” Mulcahy said, “which is much better, but it’s still potentially $30,000 worth of medicine.”

If Mulcahy can obtain authorization for the outpatient service, the cost to him directly is just $2.70 per dose.
Obtaining that authorization, however, has been something of a challenge.

“Vanderbilt processed the request,” Michelle Mulcahy said. “A few days later, they called back and said Medicare wouldn’t cover the expense, so the request had been denied.”

It’s a slightly different story than Medicare representatives have given to the family. In a letter issued to Mulcahy, it states that payment is, in fact, granted under part B coverage, which is the outpatient service.

“When we called Vanderbilt about the letter, we were told that while Medicare does cover the expense in some areas, our region is not one of those places,” Michelle said. “Well, we did some checking into it, and found out that wasn’t true, either.”

Cutting through medical red-tape has been a steady up-hill battle since then, Mulcahy said.

“The story we’ve been given now is that they can’t issue me the medicine unless Medicare pre-authorizes payment,” Mulcahy said.

Unfortunately for Mulcahy, Medicare does not pre-authorize any form of payment, regardless of the service entailed.

“We’re in the second stage of appeals now,” Michelle said. “There’s not too much farther we can go before we’d have to appeal at a federal level.”

He isn’t the only one trapped in a tug-of-war between Medicare and hospitals. Across the nation, families have been struggling for coverage, prompting the introduction of a bill by Rep. Kevin Brady, R-Texas, before the U.S. Congress.

The Medicare IVIG Access Act, H.R. 2914, would seek to amend stipulations of Medicare to include additional costs of physicians who administer the drug, as well as improve access to those receiving the drug on an outpatient basis.

However, the bill is currently before the Ways and Means committee, as well as the committee on Energy and Commerce. Until both have concluded research and amendments, the bill will not come before Congress for debate. When that will be is uncertain.

“We’re looking into treatment elsewhere,” Mulcahy said. “Only a few hospitals in the area use the drug for this purpose, and there’s one in Cinncinati that seems like a viable option.”

Until then, Mulcahy, like so many others, will continue his five-hour dialysis regimen three times a week.

“It’s a big strain on the family,” Michelle said. “Especially the kids. We used to go to church on Wednesdays, and we had movie nights once a week and had their friends over. Those don’t exist anymore.”

“It’s hit-or-miss if I can even make it to church on Sundays,” Mulcahy said. “I worked at Alcan before this round of kidney failure and dialysis. I was happy there. You’re just so wiped out and miserable, it’s hard to do much of anything but sleep.”

Mulcahy said dialysis is considerably more difficult the second time around. And unfortunately for the husband and step-father of four, while he could spend a considerable amount of time undergoing the treatment, it will eventually cease to be effective.

“That’s the thing of it, really,” Mulcahy said. “This IVIG — it’s just a shot in the dark for us, so that maybe I can at least get a kidney. But it’s something to hope for, and that’s the best we’ve got.”