Tuesday, June 09, 2015

CSOs and State 21, Patient Organizations, PAPO and HealthPRx

During the 2-days Medicines Transparency Alliance-Philippines' MeTA National Forum 2015 last February 17-18 held at Bayleaf Hotel in Manila, I noticed a significant change in NGOs involvement in public health discourse: a shift in active involvement from what I would call as "ideology-based" NGOs to "patients-based" NGOs. What is the difference between the two?

For me, the ideology-based NGOs tend to be more vocal against multinational and innovator pharma companies, against strong intellectual property rights (IPR) like patents of newly-invented medicines and vaccines, against price differentiation and advocate drug price control and mandatory price discounts. There is also implicit hatred of capitalism and support for health nationalization if not socialism.

The patients-based NGOs on the other hand are less vocal about those ideology-based concerns and are more concerned with helping patients of specific diseases have access with (a) financial assistance, (b) access to affordable medicines, and (c) support groups from fellow patient groups, other NGOs, academe, industry players and government.

After all, patients and their families do not care or segregate much whether the ones who can give them effective medicines or treatment are multinationals or local firms, innovators or generics, patented or off-patent drugs. An expensive but effective medicine would actually come as more useful and cheaper than cheap but ineffective (even substandard) medicine. The former would treat or kill a disease and improve the condition of the patient, the latter would allow an original disease to evolve and expand to something more dangerous, more lethal diseases. Of course the best scenario is cheap and effective medicines and vaccines.

So during the MeTA forum last February, I saw leaders of support groups for patients of diabetes, hepatitis, cancer, psoriasis, eyesight problems, cerebral palsy, etc. Cool. And while I have met some of them before, many others I have met there for the first time. This is a good and new development in public healthcare discussions.

Until recently, the state through the DOH and its support agencies like PhilHealth and FDA, was pressured by ideology-based advocacies like drug price control, 50 percent mandatory price cut of the most popular products of some multinational pharma. With the entry of patients-based NGOs, such politics of envy policies can be avoided or minimized.

Among those present at the MeTA Forum were the leaders of the Philippine Alliance of Patient Organizations (PAPO), the first umbrella or coalition of patient organizations in the Philippines advocating for universal access to health care and allied services, including persons with disabilities (PWDs). PAPO President or Director is Fatima "Girlie" Garcia-Lorenzo, who is also the Executive Director of Kythe Foundation, Inc. PAPO is a SEC-registered NGO.

PAPO has 12 member organizations: Akap Pinoy , Balikatang Thalassemia , Foundation for Sight, Haplos, Kythe Foundation, New Vois Association, Philippine Cerebral Palsy Inc. (PCPI), Phil. Society of Orphan Disorders (PSOD), Psoriasis Society of the Phils, Yellow Warriors, plus two others.

Girlie's deputy in PAPO is Karen Villanueva, another friend who retired from MSD pharma last year. Karen is a fellow UP alumni, she was in charge of public affairs of her company before.

Last Friday, Karen launched her new PR firm, Health PRx. As the name implies, it is a PR firm for healthcare-related campaigns and advocacies. Invited guests were Karen's family, friends, PR practitioners, former officemates at MSD, other players in the pharma sector, foreign and local. I was there, along with Jess Lorenzo, Girlie's husband and  is part of the company as its officer or director for good governance. Girlie was there too, we were seatmates in the table.

I asked Karen two questions about her company, who are their target clients, and in what sense that it is a patients-oriented PR firm?

Karen replied, 

“My target clients are persons or institutions who have a health advocacy and want to mainstream and popularize their cause. I also have to personally believe in their cause for me to take on the work. I would like to think that at the end of the day, everything we want to do for health should have the patients in mind.  And so my work in PAPO is an excellent way for me to ground my company and keep me focused on what is important.  It will be a constant and daily reminder to always put the patients perspective first.”

Cool views and mission, Karen. I wish PAPO and Health PRx a successful endeavor in the future.

See also:
CSOs and State 18: Civil Society as Lobbyists for More Government? Cigarette Warning Bill, March 02, 2014 

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