Cange Declaration: PIH's First HIV Patients Advocate for Equal Access to Treatment

Posted on Dec 1, 2013

Cange Declaration: PIH's First HIV Patients Advocate for Equal Access to Treatment
Nerlande Lahens, one of PIH's first HIV patients to receive antiretroviral therapy, read the Cange Declaration on behalf of her fellow patients in 2001.

Partners In Health began the HIV Equity Initiative in 1998, providing lifesaving antiretroviral therapy to patients dying of AIDS at no cost to them. As one of the first projects in the world to do so, the initiative was used as an example of the effective delivery of antiretroviral therapy in a poor, rural setting, providing evidence for the massive scale up of access to treatment for millions of poor HIV patients around the world. Below, the patients receiving treatment through the initiative stated their solidarity for patients without access to the lifesaving drugs. 

We, the patients of Zanmi Lasante (Partners in Health) in Cange, have a declaration we would like to put before all of you. It is we who are sick; it is therefore we who take the responsibility to declare our suffering, our misery, and our pain, as well as our hope. We hear many poignant statements about our circumstances, but we feel compelled to say something more categorical and more resounding than what we have heard.

We, the patients of Partners in Health, are fortunate to receive medication and health care even if we do not have money. Many of our health problems have been resolved with the medications. Given how bad off we used to be, we have greatly benefited. But while we feel fortunate to receive the medications, we feel sad for others who don't receive the same treatment we do.

In addition to our health problems, we have other tribulations. Even while preoccupied with being sick, we still have the problem of paying for housing. We have trouble finding employment. We remain concerned about sending our children to school, and every day we face the distressful reality that we cannot find the means to support them. Not being able to feed our children is the greatest challenge faced by mothers and fathers all over the nation of Haiti. We have learned that such calamities occur in other countries as well. As we reflect on all these tragedies we must ask: is not every human being a person?

Yes, all human beings are people. It is we, the afflicted, who are speaking. We have come together in Cange to expose the difficulties facing the sick. We also have some ideas in our knapsacks that we would like to share with you who are in authority, to see what you can do to resolve the health problems of the poor.

We have a message for all those who are concerned about us and who care about our health: we would like to thank you for the heavy load you carry with us.

When we the sick, who are living with AIDS, speak on the subject of "Health and Human Rights," we are aware of two rights that ought to be indivisible, inalienable. Those who are sick should have the right to health care. We who are already infected believe in prevention too. But prevention will not cure those who are already sick. We need treatment when we are sick, but for the poor there are no clinics, no doctors, no nurses, no health care. Furthermore, the medications that are available are too expensive. For HIV treatment, for example, we see in the newspaper that it should cost less than $600 per year. Although that is what is quoted in the press statements, here in a poor, small country like Haiti, it costs twice as much.

The right to health is the right to life. Everyone has a right to live. That means if we were not living in misery but in poverty, we would not be in this predicament today. Having no resources is a great problem for poor people, especially for women and those with small children. This is what in our abject Haitian reality is recognized as "the very struggle for life which inherently destroys life"; that is, as we scrape for life, we encounter death.

If everyone had a right to food, education, health—the way it ought to be—we would not be in such dire straits today. It is imperative that we resolve the problems of poor or no roads, water, and electricity so that everyone may live like a human being.

Why are they destroying us so? Is it because we are the poorest that they do not take our survival into consideration? Is it because we are the poorest that we are marginalized, that they do not care about us?

We have a message for the people who are here and for those who are able to hear our plea. We are seeking your solidarity. The battle we are engaged in—to find adequate care for those with AIDS, tuberculosis, and other illnesses—is the same as the combat that has been waged by other victimized people over time so everyone can live as a human being.

For those who are listening today, we have another message: this message is for those who manufacture medications. We would like to encourage you to develop and generate medications and to continue doing research. But if you do not lower the prices, we, the abject poor, will not be able to buy the medicines essential to our survival and, inevitably, we will get even sicker. We will continue to die before your very eyes, fully aware that our already insufferable situation grows worse every day.

We are making an appeal to you, Mrs. Titide (Haiti's then first lady, Mildred Aristide, who was in attendance). We, the patients of Cange, take our hats off to you for your pronouncements on our behalf at the United Nations meeting. We know you have the conviction and the will; we know you are fighting for US. Nonetheless, we ask that the government make more of an effort to rally around those of us who are sick by helping to provide us with good doctors, good nurses, good medications. We dispatch this same request to the minister of Health. It would be wise for you who are in authority to do this work quickly, before more of us who are poor die.

We have a message for all those who are concerned about us and who care about our health: we would like to thank you for the heavy load you carry with us. We who are sick love you very much, and we ask you to hang in there, to persevere with us. We recognize that it is not easy to find dedicated people like you. We are speaking specifically about the "accompagnateurs," auxiliaries, nurses, doctors, administrators and everyone all around who attends to us, including all those who cook, wash, and iron for us.

We have a message for you who suffer from the same sickness as we do. We would like to tell you not to get discouraged because you do not have medications. We pledge to remain steadfast in this fight and never to tire of fighting for the right of everyone to have necessary medications and adequate treatment.

We also have a message for the big shots—for those from other countries as well as from Haiti, and from big organizations like the World Bank and USAID. We ask you to take consciousness of all that we continually endure. We too are human beings, we too are people. We entreat you to put aside your egotism and selfishness, and to stop wasting critical funds by buying big cars, constructing big buildings, and amassing huge salaries.

Please also stop lying about the poor. It has been alleged that we don't know how to tell time and that is the reason we are ineligible or unworthy of medications that have to be taken at scheduled intervals. Stop accusing us unjustly and propagating erroneous assumptions about our right to health and our unconditional right to life. We are indeed poor, but just because we are poor does not automatically mean we are also stupid!

It is our ardent wish that this message not be put aside or relegated to the files as just another paper document. As Haitian popular wisdom asserts, "As long as the head is not cut off, the hope of wearing a hat remains."

Dr. Paul Farmer sharing a friendly moment with one of his staff.

Paul's Promise

As we mourn the passing of our beloved Dr. Paul Farmer, we also honor his life and legacy.

PIH Founders - Jim Kim, Ophelia Dahl, Paul Farmer

Bending the Arc

More than 30 years ago, a movement began that would change global health forever. Bending the Arc is the story of Partners In Health's origins.

Please send donations to: Partners In Health, PO Box 996, Frederick, MD 21705-9942