America and I 

Culture and corruption

La Virgen de Petron

Moon festival housewarming

Census sense

From patients to fighters

M. L. Tan

By now, Rosa Meneses’ name should be familiar to many Filipino households. Rosa was the Philippine Breast Cancer Network’s "poster girl", appearing in their television ads and on the TV program "Pipol" to promote awareness about breast cancer. All these appearances were part of a well-planned campaign that culminated with ABS-CBN’s fund-raising telethon last Friday.

Rosa passed away the day after the telethon. She was 48.

Rosa did more than promote awareness about breast cancer. She had an important message: Illnesses are unpleasant and adverse, but they are natural events and not something to hide. And while she described breast cancer as another natural event, she did not take this fatastically, urging Filipinas with cancer to keep going, to keep fighting. For other women, she had a message of prevention, of taking steps toward early detection through breast self-examination and mammographies.

Rosa set the pace by "coming out" with her cancer. The telethon had other women talking about their own struggles with cancer. Note that the PBCN is only one of many health support groups set up in the last few years. There are now associations for asthmatics, diabetics, parents of autistic children, even people living with HIV/AIDS. These organizations are important for letting people know they are not alone with whatever ailment they have. The organizations become important resources for information and referrals, and as in the case of PBCN, may even help to raise funds.

In western countries, where patient organizations were first established, such groups are able to lobby with government to get additional funds for research on their illnesses, and for care and support services. The actor Michael Fox is an example, recently retiring from his acting career to go full time with lobbying work for Parkinson’s disease, which he himself has.

These organizations can be quite powerful in defending patients’ rights. Pinoy Kasi, the organization of people living with HIV/AIDS, put up a vigil when an AIDS Law was being deliberated in Congress. The law was eventually passed, with important provisions to protect the rights of people with HIV.

It’s not surprising that these organizations have been able to change even the language of health and illness. For example, people are learning to move away from terms like "victims". Instead, you find terms like "cancer survivors" and "people living with HIV". Using such words transforms the patients’ role from being passive objects of pity to people in control of their lives.

Rosa’s media appearances showed more than an "empowered patient". What was striking was the way her family has been so supportive, and I do not mean this in a traditional sense of keeping the patient passive. No doubt, Rosa had her own mind but so much of what she did would not have been possible without a supportive family behind her. A few weeks ago, Rosa went off to climb Mount Fuji in Japan with other breast cancer patients. Can you imagine how most Filpino families would have reacted if a relative with cancer had made that proposal? Mind you, Rosa was in a late stage of cancer and often needed an oxygen tank.

There are real cultural differences in the way people care for patients. Unfortunately, in the Philippines, we still prefer to keep patients dependent. My sister, who is an occupational therapist living in Canada, tells me about one of her Filipina classmates who had come home to visit her mother, a stroke survivor. She found her mother immobilized in bed, unable to move despite several months of occupational therapy. Within a week, this balikbayan had her mother walking around. All it took was convincing the old woman that she could resume an active life, getting her to sit up, taking a few steps and eventually walking on her own.

It’s not just the family that sometimes block patients from helping to heal themselves. I have talked with many cancer patients and one of their greatest frustrations comes from dealing with doctors and health professionals who insist on playing god, ever resentful when patients ask them questions or assert a degree of autonomy.

Yet the medical journals have more and more reports now about how our defense and immune systems are so much tied to our state of mind. For example, during the last few days of 1999, British doctors noted how the number of deaths dropped, even among very seriously ill patients. Behind all those reports of patients hanging on, or even of "miraculous" recoveries, are people like Rosa, whose life support come not so much from ventilators and oxygen tanks than from social networks of families and friends, and their own will to live.

By allowing all of us to intrude into into their lives, Rosa, her family and the PBCN members showed us that it is in confronting illness and death that we learn the true meanings of living and loving.

You can contact PBCN at pbcn@iname.com