‘Yolanda’ hero Dario Raagas fights for his life vs giant drug firm Novartis

By Danny Petilla
Philippine Daily Inquirer
As a first responder during Supertyphoon “Yolanda,” Dario Raagas helped save lives. Now, the leukemia-stricken firefighter is fighting to save his own.

But his fight for survival has also meant battling pharmaceutical giant Novartis and its Manila subsidiary Novartis Healthcare Philippines (NHP), which he claims is denying him access to a life-saving drug after using him in clinical trials for one of its antileukemia medication.

“I was their guinea pig for almost eight years, now they don’t want me anymore,” Raagas, 43, said, adding that Novartis is asking him to pay P30,000 a month for Tasigna (generic name: Nilotinib), an expensive cancer-fighting drug used for treating chronic myelogenous leukemia (CML) that Raagas has been afflicted with since he was 30.

People afflicted with CML have a compromised ability to ward off diseases because their bone marrow produces abnormal levels of white blood cells.

Raagas said he participated since 2004 in what he described as clinical trials for Novartis’ other leukemia-fighting drug, Glivec (generic name: Imatinib), under its Glivec International Patient Assistance Program (Gipap).

Based on the website of Max Foundation, Novartis’ partner in the program, Gipap was designed “to provide Glivec free of cost to eligible patients in developing countries who meet specific medical and socioeconomic guidelines.”

Under Gipap, Raagas could access Glivec for free starting in 2004. Glivec was approved for leukemia treatment by the US Food and Drug Administration in 2001.

When his body became resistant to Glivec, Raagas’ doctors told him to try Tasigna, a change that, however, came with a hefty price tag.

P30K monthly

“I almost fainted when I received the e-mail [saying] Novartis was going to charge me P30,000 a month to use Tasigna,” Raagas said.

The billing came when Novartis broadened the Gipap program in 2008 under its Novartis Oncology Access (NOA) program.

According to the Novartis website, NOA “is a sustainable access solution through which Novartis shares the cost of its medicines with government healthcare systems, charities and other payers, or directly with patients without healthcare coverage who are unable to pay for the full cost of their medication.”

(The Inquirer called the NHP head office in Makati City to get the company’s side, but our calls were not returned. Again at press time on Friday, the Inquirer attempted to get a comment from Christine Liwanag, Novartis Philippines corporate affairs and market access director, but to no avail. Calls were not returned and she did not reply to a text message sent by the Inquirer.)

“Don’t they want me to eat anymore, buy my basic needs and provide for my wife?” asked the 17-year veteran firefighter who earns close to P30,000 a month, including benefits.

“His prognosis is not good, and he knows it. I hope he gets the help he needs,” said hematologist Dr. Gemma Udtujan, Raagas’ doctor since 2000 when he was diagnosed with CML.

‘Accelerated stage’

Udtujan, the only known specialist in blood diseases for adults in Leyte and Samar provinces, told Raagas that his leukemia was now in the “accelerated stage” (similar to stage 4 for cancer), making him prone to bleeding inside and outside his body.

Raagas, who, despite his condition, volunteered to go on duty on Nov. 7 as Supertyphoon “Yolanda” was threatening Eastern Visayas, was rushed to Divine Word University Hospital here on March 31 after he complained of severe body aches.

But because he could not afford Novartis’ leukemia-fighting drugs Glivec and Tasigna, Raagas had to take the cheaper Hydroxyurea (generic name: Litalir) whose side effects included darkening of skin and nails.

Medical problems seem to stalk the Raagas family. His brother Danilo died of cancer at age 27 in 1993. His mother Purificacion died of a stroke in June last year at age 75. The family also lost to Yolanda its ancestral house in Barangay Buri in Palo town, 12 kilometers south of this city.

Corporate citizenship

Raagas has questioned Novartis’ claims of corporate citizenship in countries where it does business like the Philippines.

“Are they here to help their patients or are they here for profit?” he asked.

Raagas’ 17 coworkers at the Bureau of Fire Protection (BFP) office in Palo, Leyte, immediately threw their support behind their embattled colleague.

“He manned the fort during and after Yolanda despite his delicate condition. That does not make him less of a hero,” said Insp. Agustin Ballo, fire marshal of Palo BFP.

Ballo and his staff have been scouring local blood banks, looking for possible donors of Raagas’ rare blood type, AB positive. Raagas has also appealed for help from Philippine Red Cross chair Richard Gordon, for easier access to the local blood bank’s supply, and to his boss, Interior Secretary Mar Roxas.

“I don’t want him to die; we want to explore all our options as long as it does not destroy us financially,” said Raagas’ wife, Marilou, who took a 100-km bus ride to Ormoc City to buy her husband’s other medication on Monday.

“I hope Mr. Thomas Weigold (NHP president and program director in Manila) is listening and will help us,” she added.

Novartis was named one of Fortune magazine’s most admired companies three years in a row since 2011, a turnaround from its widely criticized refusal in June 2009 to provide free vaccines to counter a flu epidemic in Third World countries, saying donor countries should foot the cost.

Novartis is cited as the second biggest drug company in the world, with 133,000 employees in 140 countries. In 2012, the drug giant reported worldwide net sales of $56.7 billion.

Its Philippine website said it raised a $1.5-million calamity fund to provide medicine and vaccines to Yolanda-affected communities. Its Filipino employees also raised a P330,000 donation for the victims and survivors of the supertyphoon.

Read more: http://newsinfo.inquirer.net/593716/yolanda-hero-dario-raagas-fights-for-his-life-vs-giant-drug-firm-novartis#ixzz2yeOK4FOh