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Claudia Opazo Ossandon
Country: Chile
Age: 35
Type of MS: Relapsing-remitting
Year of diagnosis: 2004
Profession: Journalist - Chief of Communications, Ministry of Public Works
In May 2004, a few weeks before my 30th birthday, I went blind in my right eye. Several days later my face became paralysed so I visited a neurologist who sent me for an MRI scan. A few days later I was diagnosed with MS - to hear this meant nothing would be the same again!
I was hospitalised for corticosteroid treatment and took medical leave from my job as a journalist at the Ministry of Public Works. I love my job and I am lucky because my working life has not been affected by my diagnosis.
Soon after, I got divorced and moved to a new apartment in Santiago. I was afraid of being alone and thought I would never find another partner. The support of my family and friends was essential. When I met my current partner Carlos I kept my diagnosis a secret from him, but he quickly guessed something was wrong. I told him I had a serious disease, started crying and told him it was MS. He hugged me and told me not to worry. Today I am no longer afraid of being alone, I feel loved and I dare to think of the future.
After my diagnosis I started using Avonex. The cost was expensive and it was not covered by the state’s Auge-Ges Health Plan (in which the government covers expenses for some diseases), so I contacted the media to bring about change. My personal experience became a news story which helped me get in touch with other people with MS. We set up a Facebook group and sent regular e-mails to politicians to highlight the campaign; my partner’s links to Congress, through his work, really helped.
On 15 November 2008, we launched our "Green Ribbon Campaign; AUGE NOW" ("Campaña Cinta Verde Limón; AUGE AHORA"). It called for the government to include MS in the Auge-Ges health plan so people with MS have guaranteed access to a physician and low cost treatment.
During the campaign we achieved nationwide media coverage and public support through public demonstrations, a campaign book "A sum of hopes" and the celebration of World MS Day on 27 May 2009. We also gained widespread political support and were praised by Chilean President Michelle Bachelet for our organised and intelligent work!
Claudia with President Michelle Bachelet
After meeting people with MS during the campaign I decided to set up the Chilean MS Group (Agrupación de Enfermos de Esclerosis Múltiple) at the start of 2009. Our main goal was to get MS included in the Auge-Ges plan and promote the rights of people with MS.
Our lobbying efforts were successful! MS will be included in the Auge-Ges state health plan from July 2010 and access to Avonex is now free. Chile is the first country to cover immunomodulatory treatment for people with MS by law!
This will mean affordable treatment for many more Chileans with MS. Before starting our battle there was no chance of MS being included in the Auge Plan, but our story is proof of exercising citizens’ rights and that dreams can come true. Due to the hard work and courage of many campaign supporters it is easier to talk about MS in Chile - now it is not an unknown subject.
I was thrilled to win the Chilean Terra media network’s Woman of 2009 competition. in September 2009. In my acceptance speech I told everyone that it was not an award for me, but for everyone who continues to fight MS! In December 2009 we broadcast a 20 second television spot to express our gratitude for the change in legislation.
Claudia with her award
The Agrupación now plans to monitor the delivery of treatment to people with MS in future. Our green ribbon continues to be a symbol of strength, fight, love, respect and hope that a cure will be found.
Having MS can be a unique opportunity to demonstrate what we can contribute to our society, in spite of all the difficulties we face. MS doesn’t have to be always a problem, but it can be a huge lesson that joins hearts, gives joy to the soul and encourage smiles to concrete solutions.
Chilean MS Group
Chilean MS Group's Facebook page
Thanks to Karina Grunwald, Agrupación de Enfermos de Esclerosis Múltiple, and Carolina Smith, Federación Española para la Lucha contra la Esclerosis Múltiple, for the translation of this text.
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