NORMAN — Today, 18 people will die waiting for an organ, according to the U.S. Department of Health and Human Services.

Mary Blankenship Pointer wants to make sure her son, Nick, isn’t one of them. A little over 31 years ago, she gave him life. Now, through the donation of her kidney, she hopes to give him the gift of life again.

“He’s always been very special,” Mary Pointer said. “He’s always been my best friend.”

Nick Pointer attended Western Heights High School and is a graduate of the University of Oklahoma. Mary Pointer, a long-time Cleveland County resident, is a senior vice president at UMB Bank, Oklahoma. She gives back to the community in numerous ways, including serving on the board of the Pioneer Library System. They are a typical American family and the road they have traveled these past few years is not one they could have predicted.

Nick Pointer is a health- conscious runner who never smoked, did drugs or drank excessively.

“He’s always made healthy choices his entire life,” his mother said.

She said her son rarely missed school because of illness and seemed to have above average health. Despite that, Nick Pointer’s kidneys have failed, and dialysis is keeping him alive as he waits on a transplant.

“My disorder is called idiosyncratic, which means they don’t know the cause,” he said. “Strep throat is one possible cause, but I don’t ever remember having strep throat.”

The first sign of trouble came in December 2005. Nick Pointer was 25 years old and had just gotten married to wife, Kristi, in September.

“I had some edema, swelling in my legs,” he said. “It was strange.”

When he saw blood in his urine, he immediately saw his doctor who referred him to a nephrologist, a doctor who specializes in kidneys.

“There’s a range of things it could have been,” Nick Pointer said.

Some of those things are more serious than others. To find out the cause of his symptoms, he was scheduled for a biopsy. Initially, his wife was concerned but not overly worried.

“Nick’s really good at downplaying things, so he made it seem routine,” Kristi Pointer said.

He said he was in denial — at age 25 he was feeling pretty invincible, but his mother remembers going to dinner with her son.

“He made me promise to always look after Kristi if anything happened to him,” Mary Pointer said.

After his disorder was diagnosed as MPGN he went through treatment and the disease went into remission for a time.

“It’s typically a 20 to 30 year progression to dialysis because of kidney failure,” he said.

The treatment was rough, and he had a couple of flare ups that required more treatment, but basically the young couple returned to life as normal.

In February, life threw them another lemon. The nurse called and told him the last treatment had not worked. He was immediately put on four days of dialysis.

“It was a shock,” he said.

He lost 16 pounds as the dialysis removed toxic fluids from his body. A surgeon told him, he was a good candidate for a transplant because of his age and health.

Being young and relatively healthy does not move you up on the donor list, however. DHS reports there are an average of 79 people who receive organ transplants each day, but there are 114,223 people are waiting for an organ. A single organ donor can save up to eight lives.

“I’ve seen a lot of people much worse off than I am,” Nick Pointer said. “There’s a lot of pain invovled in dialysis. A new kidney can change their lives. Dialysis is a very intrusive situation to be in. It’s part of your everyday life — there’s never a day off from it.”

Fortunately for Nick Pointer, there is a living donor available to give him a kidney — his mother.

Mary Pointer is going through the process and so far everything is moving along well.

“I have 12 tests that I have to take,” she said.

She made it over the first two hurdles of matching blood type and antigens.

“We’re hopeful,” Nick Pointer said. “Personally, my view is take it one step at a time.”

“The best case is to have a pool of possible donors,” Mary Pointer said.

Family and friends can be a match, but the best case scenario is usually from a sibling, they said.

Kristi Pointer said she has made it through the treatments, tests and hospitalizations because her husband has been so strong. He continues to work despite the demands of constant dialysis.

There are two types of dialysis, and Nick Pointer has chosen a lengthy night procedure while he he tries to sleep. The procedure allows him to keep his days free for work.

Treatment is expensive. Insurance and Medicare help with costs, but he said while Medicare helps in the case of kidney failure and transplant, there are people who need other organs that Medicare does not cover.

The Pointers have kept their ordeal reasonable private. There is no room in Nick Pointer’s life for self-pity. But the family would like to share what they have learned with others — there is a great need for organ donors.

As important as it is to sign up to be an organ donor in the case of sudden death, living donors are also very important said the Pointer family.

And someone who is tested for a friend or family member but is not a match, may get an opportunity to help someone else if they so choose.

“You’re not forced to do anything,” Nick Pointer said.

The privacy of donors is protected, and if a potential donor gets cold feet, the recepient never knows anything except that it didn’t work out.

There’s a very thorough screening process, and donors can back out up until the very last minute if they change their minds.

Living donors pay none of the medical costs. In the case of deceased donors, the families or estates also do not incur any cost as a result of an organ donation.

Nick Pointer feels lucky to have a mother who is dedicated to making sure he gets a second shot at a long and normal life. But he’s also grateful for the challenges he’s faced since illness struck in 2005.

“I think that it’s made me more appreciateive of my time, more driven to accomplish things,” he said. “It’s ultimately given me an opportunity to live a better life than I would have otherwise.”

The devotion of his family has meant a lot as well. Wife Kristi stayed by his bedside through the worst of times.

And his mother?

To steal a line from the movie “Steel Magnolias”: “At least they know how much they mean to each other.”

For Mary Blankenship Pointer, the chance to give her son life twice is a gift both can share.

Joy Hampton 366-3539 jhampton@ normantranscript.com

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By David Morgan

WASHINGTON (Reuters) - A U.S. Food and Drug Administration panel of outside experts on Friday recommended the use of Gilead Sciences Inc's Quad pill for untreated HIV patients.

The FDA advisory committee voted 13-1 to endorse the four-drugs-in-one treatment, but members said there should be effective monitoring for potential kidney problems among patients and urged further research to determine the drug's safety profile for women, who have been under-represented in clinical research.

The panel's recommendation will now be taken into account by agency regulators, who are expected to decide on final approval for Quad by August 27.

An overwhelming number of the experts said they were satisfied with Gilead's demonstration of safety and efficacy.

But Dr. Michelle Estrella of Johns Hopkins University School of Medicine, the panel's lone 'no' vote, said data on potential renal problems and women's health was too limited to justify her approval.

"There are plenty of alternatives to Quad," she said. "There's no huge hurry in approving this drug before the outstanding studies are completed."

Gilead shares closed 1.2 percent higher at $51.84 after the committee voted.

Wall Street analysts said the panel's action was expected and predicted more good news for Gilead on the FDA front.

"Approval of the Quad is likely with renal monitoring. Renal monitoring is not a particular concern," J.P. Morgan analysts said in a note to investment clients. "We believe the Quad will further strengthen Gilead's market leading HIV business."

In fact, the new drug is seen as key to Gilead's continued dominance of the market for HIV drugs. Most of the company's current drug sales, which totaled $8.1 billion last year, come from Atripla, a once-daily pill that combines Truvada with Bristol-Myers Squibb's Sustiva. Truvada consists of Gilead's older HIV drugs Emtriva and Viread.

On Thursday, the panel also recommended Gilead's Truvada pill as the first-ever drug for use in preventing HIV infections.

Nearly 1.2 Americans are infected with the human immunodeficiency virus that causes AIDS and the HIV epidemic grows by 50,000 new cases each year, according to the U.S. Centers for Disease Control and Prevention.

Company research shows Quad to be 88 percent effective at suppressing HIV infection, surpassing 84 percent efficacy for Atripla. But data also indicated a disproportionate number of kidney problems among the hundreds of patients who participated in clinical trials.

It combines the experimental integrase inhibitor elvitegravir with the boosting agent cobicistat and two older nucleotide reverse transcriptase inhibitors - emtricitabine and tenofovir.

If approved by the FDA, Gilead executives said Quad would provide HIV suffers with the first ever once-daily integrase inhibitor, a class of drug designed to block the spread of HIV by preventing the virus from binding with the DNA of host cells.

Advocates said the one-a-day regimen would encourage patients to adhere to the treatment with Quad, boosting the likelihood of high efficacy outside the clinical atmosphere.

But HIV activists who provided public testimony warned policymakers to be wary of new HIV drugs that provide only marginal improvements over current treatments but allow drug makers to charge significantly higher prices at a time when public assistance can be restricted by government budget constraints.

"Reduced access here in America is compelling AIDS activists to rethink the rules on drug pricing," said James Driscoll of the AIDS Healthcare Foundation, a Los Angeles-based nonprofit group that provides care for nearly 170,000 HIV and AIDS patients.

Gilead said it has yet to establish a price for Quad. Atripla currently costs about $20,000 a year.

(Reporting By David Morgan; Editing by Gerald E. McCormick, M.D. Golan, Gary Hill)

...

LISBON — For Francisco Reposo, the 30% pay cut he was forced to take this year amid government austerity measures is the least of his worries. The high school science teacher is also on dialysis, awaiting a kidney operation, and Portugal's financial bailout means he's saddled with hundreds of dollars in monthly medical bills.

The cost of seeing a doctor in Portugal has more than doubled, from about $12 to $26 a visit. Reposo used to pay nothing for dialysis because he's a blood donor, but that exemption was lifted, and he now pays about $53 for each session. Last month, he went three times.

"It's had a serious impact on my financial situation," said Reposo, 51. "But I need to go to the hospital, because otherwise it's horrible pain."

Those fees may seem low by U.S. standards. But the Portuguese, like most Europeans, have long been accustomed to universal public healthcare, one of the government benefits at the core of Europe's postwar welfare state. Now such entitlements are slowly being chipped away by the continent's debt crisis.

At least half a dozen European countries have either increased health fees in recent years or are considering it as a way to cut costs. Spain, Portugal's neighbor on the Iberian peninsula, is in the process of implementing a slightly less punishing version of Lisbon's new fee scheme in hopes of staving off the need for a bailout.

The cutbacks may be having a particularly grim effect here in Portugal, already Western Europe's poorest country. The nation's mortality rate shot up this winter: Nearly 20% more people died in February and March than in those months last year.

The government blames a nasty flu strain to which the elderly are most vulnerable, especially this winter, which was colder than average. But independent organizations and some opposition politicians say it's evidence that austerity not only imperils people's livelihoods, but may also endanger their lives.

In light of Portugal's bailout last year by the European Union and the International Monetary Fund, which totaled more than $100 billion, Lisbon says the fee increases are necessary to come in line with EU spending rules and slowly dig itself out of debt. Hospitalization now costs $26 per day, and as much as $67 if additional services such as a CT scan or X-ray is needed.

Yet while those fees go up, incomes in Portugal are forecast to fall 3.25% this year, in a country where the average salary is just $16,400 a year. The country's jobless rate is more than 14% and rising. And there is fear that the government may have to ask for a second bailout.

Reposo says that the number of fellow chronic kidney-disease patients he used run into at the hospital has dwindled.

"A lot of people had to stop taking their pills," he said. "Many people avoid going to the hospital, because they have no money to pay the fees."

The government estimates that one-third of the country's public hospitals are insolvent. The breakdown in care disproportionately endangers the elderly, many of whom "live in misery and poverty," said Ana Filgueiras, who runs a local charity called Cidadaos do Mundo, or Citizens of the World.

"I spoke with many people who were ill before these changes, and sometimes they would not go to the doctor because they could not pay for transport or because they could not walk," Filgueiras said. "So if you think about that, and now the fact that they need to pay [so much more] — it's an extra burden."

Filgueiras offers the example of her own mother, anAlzheimer'spatient who survives on a typical government pension of about 300 euros a month, just shy of $400. She's on medication that's available at a discount only with a neurologist's signature, but the nearest specialist is a two-hour bus ride away. Filgueiras often intervenes to pay for the medicine at full price rather than risk her mother getting lost, confused or injured on the commute.

"Without a signature, the medicine costs 160 euros per pack, and she uses two packs per month," Filgueiras said. "So can you imagine?"

Portugal already has Europe's highest rate of diabetes, and the third-highest in the developed world, behind the United States and Mexico, according to the Organization for Economic Cooperation and Development. A recent study by the Portuguese Society of Cardiology estimates that 1 in 4 Portuguese runs a high risk of dying of a heart attack or stroke in the next 10 years, but only 30% of those at risk take adequate medication.

Now a sick economy may be exacerbating that.

"It's true we had user charges dating back to the '90s, but they were relatively low," said Pedro Pita Barros, a health economist at Lisbon's Nova School of Business and Economics. "The level has doubled here now, and that was not expected."

In addition to higher charges, free transportation for most seniors was scrapped. And some special concessions were eliminated, such as blood donor Reposo's exemption from fees.

Reposo is on a waiting list for surgery, and his dialysis appointments will increase in frequency the longer he waits.

"I'm able to go, because I still have my salary, even if it's smaller now," said Reposo, who turned up at a recent anti-austerity protest in Lisbon to vent his frustration. "But I don't know. One day, if I have no money, will I decide not to go?"

Frayer is a special correspondent.

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The boy Amarnath Shidagantimath has been ailing from kidney related problems for the past few years. Initially doctors put him on medicines and later they prescribed dialysis. The last two years were miserable for the family as

Amarnath had to go to hospital twice a week for dialysis.

Amarnath's father Veerabhadrayya Shidagantimath earns a living from a piece of agricultural land that he owns in Ingalahalli of Hubli taluk. Mother Mahantavva is a homemaker. The couple has three sons. They shifted to Hubli from Ingalahalli so as to facilitate their children's education. Their first son is studying engineering and second one is doing a diploma course. Amarnath, their third son had to give up studying after class VI due to his illness.

When bearing the cost of dialysis became increasingly difficult for the family, and when Amarntah's condition worsened he was referred to Manipal Hospital in Bangalore, where doctors said that only a kidney transplant could save the boy.

Then began the anxious search for a donor. As days went by, despair descended upon the family since they failed to find a donor who could save the life of the boy. However, it was destined that Mahantavva, who had given birth to Amarnath, would step forward to give him a second life.

"When we failed to find a donor, my wife came forward to donate him one of her kidneys. After the lab tests, doctors declared her a suitable donor. The transplantation took place on Thursday. Our son is now recovering," said Veerabhadrayya, who is now a relieved father. "My wife's sacrifice for our son is great and selfless," he said.

Speaking to the STOI, Mahantavva, 50, who is recuperating after the kidney removal surgery said, "I have given my kidney to my son so that he recovers from his illness. He is still in ICU. I pray God will give him a long and healthy life."

Dr S Vishwanath, nephrologist, Manipal Hospital, Bangalore, said: "Amarnath was on dialysis for over three years. Both of his kidneys had failed and eventually kidney transplant remained the only option before us. His mother came forward to donate her kidney and since we found her a suitable donor we carried out transplantation. The operation has been successful and both mother and son are recovering."

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