Foundation: Yolanda hero did not undergo clinical trial

ABS-CBN News

Posted at Apr 20 2014 04:02 PM | Updated as of Apr 21 2014 12:02 AM

MANILA -- A foundation clarified that its partnership with giant firm Novartis was never meant as a clinical trial for patients with cancer.

In an e-mail sent to ABS-CBNnews.com, The Max Foundation head Pat Garcia-Gonzalez said: “For the past 12 years, my organization has been the global administrator of Novartis’ (Glivec International Patient Assistance Program)… GIPAP is an access program set up by Novartis in 2002 to help patients receive Glivec in certain countries including the Philippines. “

It was the same access program that provided firefighter Dario Raagas with free medicines for around nine years for his leukemia, she said.

Raagas’ story first came out in the Philippine Daily Inquirer.

Raagas claimed he was Novartis’ guinea pig for the drug Glivec and later said his cancer became resistant to the drug. His doctors later told him to try Tasigna, which came at a hefty price tag of P30,000 a month.

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

Netizens later came to his rescue via a petition on Change.org after Makati-based dentist Joy Margate Lee sought the help of netizens.

“He served as a first responder during super typhoon Yolanda (Haiyan), despite his struggle with leukemia. Now Dario Raagas needs your help as he battles to save his life," Lee said.

“Let us ask Novartis Healthcare Philippines (NHP) and its mother company, Novartis, to provide for free the medicine Dario needs to survive,” Lee said.

“Please join me in fighting for Dario’s life by signing this petition. Let us ask Novartis Healthcare Philippines (NHP) and its mother company, Novartis, to provide for free the medicine Dario needs to survive,” she said.

Garcia-Gonzalez explained that in the absence of a national scheme that will cover the expenditures of cancer patients like Raagas, Novartis provided the treatment for free.

“By partnering with industry, government agencies, health care providers, national cancer patient organizations, and others, we are able to provide effective solutions for access to treatment. Through personalized access services, quality training and education, and global advocacy efforts, we aim to help people face cancer with dignity and hope,” she said.

She said that as administrators of GIPAP, the foundation manages the medical information of patients received from their physicians and then coordinate these with health care providers.

Since it was an access program, it was only introduced to patients only after approval by the US’ Food and Drug Administration and European health authorities, she said.

“At the time Mr. Raagas accessed the treatment, the drug was also approved by the Philippine FDA. The GIPAP program is not and never has been a clinical trial,” she said.

The program here was implemented via the help of local partner, Touched by Max.

“Touched by Max is a local patient support organization for people living with Chronic myelogenous leukemia (CML) and Gastro Intestinal Stromal Tumor (GIST) in the Philippines. The organization was founded and is run by a group of patients and caregivers, and works closely with The Max Foundation to extend support and information to their members,” she said.

She also noted Raagas, who needs Tasigna, still have other options.

“For people living with CML who are in need of a second generation treatment after Glivec, there are several treatment options. One of the options is an approved drug called Tasigna, a treatment also made by Novartis. Tasigna can be accessed in the Philippines through an access solution called Novartis Oncology Access (NOA),” she said.