Groups unite to demand gov’t action on their sad plight

Patients, whether afflicted with a rare disease, certain form of cancer, communicable disease, debilitating or disabling condition, elderly, or in need of financial assistance if not access to a healthcare provider, recently gathered at the Bayleaf Hotel in Intramuros, Manila, to demand government action on their sad plight.

The two-day conference was organized by the Medicines Transparency Alliance (MeTA) Philippines and Philippine Alliance of Patient Organizations (Papo) with the support of the World Health Organization.

According to MeTA Philippines chair Roberto Pagdanganan, the organizers were able to gather 100 participants from patient organizations, health advocates in civil society, the elderly sector, women’s health groups, government and healthcare professionals.

The former Bulacan governor and agrarian reform secretary explained: “The conference is expected to lead to the development of a framework that will allow an empowered patient sector to constructively engage other stakeholders and ensure that the health system can effectively and efficiently address the full range of patient needs. We intend to form an umbrella organization or network that will provide the platform to engage with and listen to the collective voice of Filipino patients.”

Also during the conference, presentations from various patients groups were heard.

Philippine Cerebral Palsy Inc. executive director Precy Declaro-Deluria said: “Ideally, important drugs and medical services should be available in all government hospitals or rural health centers. This arrangement should prevent families from uprooting themselves in order to access the needed medicine for an ailing household member. In reality, however, a number of drugs and medical services could only be availed at big government hospitals in Metro Manila and a number of them are not always available even for those who had the money to buy them.”

Salvacion Basiano, president of the Center for Empowerment and Development of the Elderly, is also facing a similar challenge. She said: “Many senior citizens like me could only rely on what we get from our meager pensions. We are still awaiting President Aquino’s promise [during his third State of the Nation Address] that no senior citizen would receive a pension less than P5,000 a month. Right now, I am only receiving P3,000 a month.” She asked, “How could I live on that and buy medicines at the same time?”

Right diagnosis

Philippine Society for Orphan Disorders (PSOD) president Cynthia Magdaraog related about the challenges she had to endure as her son has Pompe disease, a rare and debilitating condition. She said: “We had to go to the United States for us to finally get the right diagnosis. There were no tests or available literature here. Moreover, very few doctors here could recognize its symptoms.”

It was only in 2006, when Magdaraog together with doctors and other families of individuals with rare disease formed PSOD, that their group was able to seek partnerships with foreign organizations, donors and locally based pharmaceutical firms. This enabled them to get access to hard-to-get medicines and equipment, call the attention of certain outfits to do more research on certain disease and at the same time government authorities who could provide them financial assistance.

“We are still awaiting the passage of a law that would establish a system that will help patients and their families cope with the financial and nonfinancial challenges of living and dealing with this lifelong medical condition,” said Magdaraog.

Fight discrimination

Buena Bariring of the Yellow Warriors Society Philippines, an organization whose members are mostly infected with hepatitis B virus, has to face a different sort of battle: dealing with people who exclude, target, or ostracize them. Bariring said: “We knew of pregnant women who were forced to hide their condition because their doctors might refuse giving them prenatal care. One woman even related how a midwife turned her away from a clinic, telling her she had to think about the health workers who might get infected.”

As a result, she said more and more Filipinos are resorting to avoid being tested for hepatitis B virus because of fear of discrimination and those who knew they have the virus have concealed it from others.

Bariring suggested: “They fear that they will be isolated or may even lose their jobs. If we continue to just fear the disease, hepatitis B virus may continue to spread to more people. The best way to handle this is to orient medical workers about the virus and inform both carriers and noninfected people about practices that are effective in preventing infection or transmission and not needlessly ostracizing anyone.”

A similar problem is also being faced by individuals with psoriasis, a chronic but noncontagious skin condition that causes one’s skin to develop thick, white, silvery, or red patches.

According to Psoriasis Philippines, there was an instance when one of their members was not allowed to board an airplane because of lesions on the face and was even asked for a medical certificate that that person could travel.

Mechanism

Papo president Maria Fatima Garcia-Lorenzo said conference participants have proposed social accountability mechanisms that will allow patients to monitor and report on the quality of government facilities and services.

“Papo is expected to maximize the participation of other stakeholders and Filipino patients during and after the conference to invite support for the alliance and heighten awareness on priority issues and concerns,” she said.

Pagdanganan added: “The Universal Declaration of Human Rights asserts that access to medical care is a human right and yet 67 years since this declaration was adopted, access to healthcare is far from universal. We need the cooperation of everyone, most especially the government to bridge the physical gap between patients and health centers. We need the government to minimize healthcare costs by subsidizing medical expenses and galvanizing medical volunteers. Since the lack of education leads to the spread of disease and prevents patients from seeking healthcare, we need everyone especially the government to fill the educational gap. [With more than P100 billion, the DOH is among the top 10 agencies with the biggest budget.]”