The new AIDS drug, Fuzeon, has been called a life saver.
It's for patients who fail to respond to other available treatments.
Doctors and patients are excited about the new possibilities the drug offers people infected with HIV.
But for man patients, this lifesaving drug is out of reach.
New Hampshire Public Radio's Rebecca Kaufman has the story.
Mark Parsons is tall and gaunt?
He weighs 160 pounds down from his normal 205.
He sits in his half empty living room.
It's half empty partially because he is moving out of his Hinsdale home..
It's half empty also because he and his former partner have sold off many of their belongings.
They had to pay some of Parsons' recent medical expenses.
Earlier in the year he fought a tough battle with cancer?Parsons says he thinks he?s fully recovered.
But now he has a new more complicated health challenge.
Parsons has HIV.
His CD4 cell count- a measure of the strength of the immune system- has dropped below 200.
That means he now has AIDS.
Track 2 :40 its scary because you don?t know what will happen next?..right now, I?m in that range of getting another cancer or pneumonia, im open to everything because the immune system isn?t there
Parsons has developed a resistance to the HIV drug regimen that had been keeping the virus at low levels in his body.
To live, he's got to get the virus back under control and his immune system healthy again.
His only option is a new drug called Fuzeon.
It?s novel because the drug is not related and therefore not cross resistant with the other drugs.
Bryan Marsh is an infectious disease specialist at the Dartmouth-Hitchcock Medical Center?and Mark Parson?s doctor.
Track 6 1:0 he doesn?t have other good options available because his immune system has been getting weaker fairly quickly recently, we need to get him as much benefit for him immune system as quickly as we can or he will die of AIDS in the relatively near future
The only problem is Mark Parsons can?t get Fuzeon.
He receives his drugs for free through New Hampshire?s Aids Drug Assistance Program.
ADAP is the safety net for people infected with HIV who don?t have private insurance and who don?t qualify for medicaid.
Last year, NH's ADAP received about 2 million dollars in federal funding and serves about 330 people.
Unlike other states, New Hampshire puts no state money into the program,
Last October NH added Fuzeon to its ADAP drug list.
But says Dr. William Kassler, fuzeon has one large drawback. ?.it's cost.
Kassler is the state medical director and chair of the NH ADAP medical advisory board.
Track 3:00 it?s 4 times the cost of other drugs, for one person on fuzeon you can pay for triple drug therapy for four people
An ADAP patient is typically on a three drug regiment that costs the program around 9,000 dollars a year.
A patient on Fuzeon faces costs around 25,000 dollars a year.
And when a patient starts taking Fuzeon they don?t stop their other HIV treatment.
That means one patient on Fuzeon takes about 35,000 dollars a years from the ADAP funds.
Dr. Kassler says there's simply not enough money to go around.
3:40 the question we have from an ethical and policy perspective is there are people who may be waiting in line to get the basic three drug regiment, there are other people who have failed those and Fuzeon might be life saving for them?.we don?t have enough money to pay for both.
NH's ADAP advisory board decided it could afford to put 2 people in the entire state on Fuzeon at any given time.
Their policy is first come, first serve.
Everyone else is put on a waiting list.
Since October only one person has been on that waiting list.
That person is Mark Parsons.
Track 17 :10 probably the only way I get it is if one of the those two people die its kind of morbid to think that that?s the only way I?ll get it is if someone else dies
But when the ADAP medical advisory board added Fuzeon to their list of drugs, they did so with the expectation that patients like Mark Parsons would have another option for finding coverage for Fuzeon.
They thought he'd be able to get it from the pharmaceutical company that manufactures the drug, Roche.
Like many drug companies, Roche has its own drug assistance program to help people who have no other coverage.
State medical director Dr. Kassler says a year ago, Roche came to ADAP with a message.
3:56 back in January of 2004 Roche told the entire country that it wouldn?t take any ADAP eligible people into their program, they also said if you didn?t put Fuzeon on the formulary it furthermore wouldn?t put anyone in the state onto their program
So says Kassler NH's ADAP added Fuzeon to it's formulary, or approved drug list.
He says they were led to believe that Roche would pick up anyone on the waiting list.
Track 3 the frustrating thing for us is at Roche now they said they will no longer fund anybody on a wait list, now after putting the proverbial gun to our head and forced us if you will to open up the formulary now they?re saying sorry we?re not going to fund this patient or any on a wait list
But Roche's spokesperson, Maureen Byrne, says that was never the company?s policy.
3:15 in the first six months following the FDA approval of Fuzeon, in recognition of the financial challenges faced by many state ADAP programs and also the critical role Fuzeon would play we opened our patient assistance program to some ADAP eligible patients while state ADAPs worked through clinical reviews to put Fuzeon on their formulary and after that we returned to our normal patient assistant criteria
And that criteria excludes patients whose medication is paid for by ADAP, even if they are on a waiting list for Fuzeon.
And she says Roche cannot just pick up where ADAP leaves off.
2:11 ?..our policy is we provide therapies to uninsured patients who lack any source of reimbursement for prescription drugs and can?t afford treatment, we are not intended to replace private insurance, medicaid or state ADAP
And that leaves Mark Parsons in the inauspicious position of knowing there is a drug out there that could prolong his life, but for now is unattainable.
Parsons says at first he felt angry.
But that anger has turned to depression.
Track 7 :56 I want to stay alive, I?m not fond of the idea of dying, the biggest feeling is sadness, not for me, for the people that all said no, I feel sad for them, because they have no idea what they?ve done, I thought the world was a better place than that
Parsons says he hasn?t given up?but he's exhausted most of his options.
He even contacted a former client of his to ask for financial help?but he got no response.
He says the entire situation makes him feels like someone put a costly price tag on his life.
And State Medical Director D. Kassler says, in a way, that's just what is happening.
Track 8 1:25 We are fundamentally talking about rationing of scarce resources, in this land of plenty that's a difficult concept to be dealing with especially around life saving medications, but that's exactly what we're doing?and it's very hard to look someone in the eye and say no we can't get you this medication that you need to save your life.
For NHPR news, I?m RK
