We, the people infected with drug-resistant tuberculosis (DR-TB), live in every part of the world.
Most of us were exposed and became infected with DR-TB because of the poor conditions in which we live. Undiagnosed, this disease spreads among us. Untreated, this disease kills. But in the countries in which we live, fast and accurate diagnosis is rarely available and only about one in five of us actually receive effective DR-TB treatment.
Those of us “lucky” enough to receive treatment have to go through an excruciating two-year journey where we must swallow up to 20 pills a day and receive a painful injection every day for the first 8 months, making it hard to sit or even lie down. For many of us, the treatment makes us feel sicker than the disease itself, as it causes nausea, body aches and rashes. The drugs make many of us go deaf permanently and of us develop psychosis.
For most of us, life as we knew it changes dramatically. We cannot go to work, or take care of our loved ones, or go to school. Often, we are stigmatised and face social exclusion. Surviving this treatment itself is a huge challenge — one that many people cannot manage. But we have no choice if we want to live. So we must be brave, strong-willed and have hope that we will be cured. We need immense support from our medical staff, our family and our friends to help us complete our treatment. And even then, only half of us are successfully treated with the current drug regimens. For every person with DR-TB who signs this manifesto, there is another person who is no longer able to. The demands we make in this manifesto are therefore made in honour of their memory.
We, the medical staff who provide medical care for people with DR-TB, find it unacceptable that the only treatment options that we can offer people cause so much suffering, especially when the chance of cure is so low. We have no choice but to juggle combinations of largely ineffective and toxic drugs, while doing our best to manage the debilitating side effects and provide as much support and counselling as possible with limited resources.
As the epidemic continues to spread, DR-TB becomes increasingly hard to tackle. The treatment is too long, too toxic and too costly – the drugs alone cost at least $4,000 just to treat one person. We want to save many more lives, but we desperately need shorter, safer and more effective treatment to do so.
We, the undersigned people with DR-TB and those involved in their care, here raise the alarm about the devastating toll this disease is taking on us, our families and communities across the globe and therefore make the following three demands:
1) We call for universal access to DR-TB diagnosis and treatment now:
2) We call for better treatment regimens - the TB research community, including research institutes and drug companies, must urgently deliver effective, more tolerable, shorter and affordable DR-TB drug regimens:
3) We call for more financial support to increase DR-TB treatment, and a commitment to support research into developing better treatment:
We as patients and healthcare providers commit ourselves to:
- Encouraging each other to test for TB, take our treatment and remain in care
- Protecting those people close to us from TB transmission
- Holding our governments accountable and pushing them to respond to the crisis
- Sharing our stories to improve TB awareness and reduce stigma in our communities