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Introducing CLAN (CAH: Living As Neighbors)

by Kate & David Hansen

CARES Members from Australia

What If…?

Have you ever reached for that bottle of hydrocortisone or fludrocortisone and felt that involuntary shiver down your spine as your mind played those irrational “what if?” games?  What if you couldn’t get any more medicine? What if you knew this was your last bottle and it had to somehow last you the next few months? What if…?

Thanks to two articles in the CARES Foundation Fall Newsletter of 2004 (see the newsletter archives at www.caresfoundation.org) we, the international CAH community, were made aware that this scenario is in fact a horrible reality for hundreds of families living in Vietnam with CAH.

The Situation in Vietnam

In Vietnam CAH can be an enormous burden on patients and families who are unable to access affordable medication. Fludrocortisone and hydrocortisone are not routinely imported into the country, and so families are forced to purchase their drugs on the black market at huge expense. Just one bottle can cost a family over one third of their already modest monthly income. Unable to access hydrortisone, parents are left with no choice but to use inferior substitutes for their children – when it’s all you can get you take it. Problems with drug availability and affordability also mean parents are rationing doses, and chronic under-suppression comes at a great cost. Short stature is common amongst older patients. Several children with CAH die each year – rates unheard of in wealthier countries of the world.  It was the enormity of this inequality that sparked CLAN.

CAH: Living As Neighbours

CLAN is an acronym for CAH: Living As Neighbours. It is a charitable organization based in Australia, that is dedicated to the dream that all persons living with CAH in the developing countries of the world have affordable access to essential medications. CLAN is based on the concept that families affected by CAH belong to a worldwide community – a human family scattered around the earth. But more than this, we can choose to live as a community, and care about each other as neighbours.

Sometimes it is easy to forget things that are painful and hidden by distance. But the international CAH community has the opportunity – and responsibility – to speak out and take action to support our members in developing countries.

We have seen examples already of the power of the CAH community when it unites. Consider organizations such as CARES; the various National CAH Support Groups that meet around the world; the numerous newborn screening lobby groups; many web-sites sharing information and support, and the various CAH Conferences that present the latest treatments and advances in technology for all to share.

What is CLAN doing to help?

There is a big movement worldwide currently looking at improving affordable access to essential medication for people living in developing countries. Most notably these discussions relate to patients affected by HIV/AIDS, malaria and TB.

In all these international policies and good works, CAH rarely rates a mention. Most babies die before accurate diagnoses are made, and the numbers that survive are so small as to make them virtually powerless. Cultural taboos related to ambiguous genitalia also mean that parents in some countries are reluctant to speak out. Even in the formulation of the World Health Organisation’s List of Essential Medicines, fludrocortisone was recently removed, apparently because it was thought only patients with Addison’s Disease needed it, and their numbers were so small as to not warrant the drug’s inclusion.

As the international CAH community – and members of civil society - we have a responsibility to understand the situations facing our members in developing countries, and speak out when they need our support to right wrongs. Long-term sustainable solutions will require a dedicated, collaborative approach involving: developing country governments; international organisations (such as the WHO); health professionals; pharmaceutical and biotechnology companies; non-government and philanthropic organisations, as well as the broader private sector. As caring neighbours, we need to monitor the activities of the various stakeholders mentioned above, lobby when they fail in their duties, and do what we can to effect change.

To this end, CLAN has worked first to put a halt to the suffering of children with CAH in Vietnam by securing access to free medication for all 220 CAH families in Hanoi for the next 2 years. This has been enabled by the generous support of two large drug companies in Australia, as well as some basic fundraising. Through our association with the Royal Children’s Hospital International (RCHI) (the philanthropic arm of the Royal Children’s Hospital in Melbourne, Australia) we are able to offer receipts for tax deductions on all donations over $2. We are also able to access the enormous experience and energy of the staff of RCHI, and tap into their strong relationships with the National Hospital of Paediatrics (NHP) in Hanoi.

However this has just been the first step, and unfortunately could prove nothing more than a temporary band-aid measure unless long-term solutions are found. Consequently we are now communicating widely to understand the specific barriers to affordable access to medication in Vietnam, and lobby for change within the capacities of existing health systems and budgets. Physicians in Vietnam are also working hard for change, and CLAN is keen to support their efforts. We are also sponsoring the next annual CAH Support Group meeting in Hanoi – an active and vocal local group will be essential for the future.

CLAN’s Vision for the Future

We hope that CLAN is really only just beginning. Already we are liaising with doctors in the Philippines who want to help their patients access hydrocortisone and fludrocortisone – these drugs are not routinely imported into the Philippines either. Presently the doctors are purchasing the drugs themselves when traveling abroad, or through friends overseas – that’s commitment! - and one Florinef tablet can cost a family $2. Because donations of all drugs to treat all CAH patients in the developing world is not a viable answer, CLAN is communicating with drug companies and other responsible stake-holders with the hope of finding sustainable solutions. We hope to support the establishment of a CAH support group in the Philippines so the people can harness their own power to bring about change.

Where to next? No doubt we will learn of other CAH families in other developing countries who need support, and we hope in the future to work with them also.

What can you do to help?

Please consider what YOUR role could be in this united international CAH community. Do you have special skills or contacts that could help? Do you feel especially called to be involved? Are you good with fundraising? Could you afford to make a regular donation? Please visit CLAN’s website (www.cahclan.org ) and contact us if you have any queries, suggestions or offers.

 Kate, David and their 3 children (eldest, age 6, has CAH) live in Sydney, Australia. David works in food manufacturing as a food technologist like his hero Clark W. Griswold, and Kate is a practicing doctor.

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