(29 May 2024)
RESTRICTION SUMMARY:
ASSOCIATED PRESS
San Francisco de Mostazal – 28 May 2024
1. Various of Camila Gómez, campaigner walking to raise money for her son, walking
2. SOUNDBITE (Spanish) Camila Gómez, campaigner walking to raise money for her son:
"Marcos, who is the president of the corporation to which we belong, came up with this idea. He invited me and it seemed like a very good idea to raise the money and fortunately it worked. I never thought I would raise the total within this month. Yes, I thought I was going to gather something, but I never thought about this level of empathy and solidarity from people."
3. Gómez walking along road
4. Man waving at Gómez from bridge across road
5. People greeting Gómez
ASSOCIATED PRESS
Santiago – 28 May 2024
6. SOUNDBITE (Spanish) Daniel Bórquez, academic at the Biomedical Research Center of the Diego Portales University: ++QUALITY AS INCOMING++
“This genetic therapy has to be applied in centres that are specialized and know very well the problems that this therapy can have, because patients are injected with a very large amount of viruses, to ensure that these viruses reach all the muscle cells in the body, most of them.”
ASSOCIATED PRESS
San Francisco de Mostazal – 28 May 2024
7. Gómez walking and greeting people
8. Gómez passing under banner reading (Spanish): "We are part of the million"
9. SOUNDBITE (Spanish) Camila Gómez, campaigner walking to raise money for her son:
“When he was told about this medication, it was not yet approved by the FDA. They were in the study phase, so it was several months that we had nothing, and we were in mourning, so to speak, suffering because our son had no other option than to follow the natural course of the disease. But when this came out, it was like a light of hope for us and even though the price was very high, there was at least something to fight for."
ASSOCIATED PRESS
Santiago – 29 May 2024
10. Various of Gómez and Marcos Reyes, president of the Duchenne Families Chile Corporation, entering presidential palace
11. Gómez and Reyes with Chile’s president Gabriel Boric
STORYLINE:
When Camila Gómez’s 5-year-old son was diagnosed with a serious genetic disease she decided to put on her trainers and walk the more than 1,300 kilometers that separate Chile’s southern island of Chiloé from Santiago, the nations capital.
On Wednesday, she arrived at the La Moneda Palace and met with President Gabriel Boric.
Gómez made the epic journey to raise funds for her son’s medical treatment, which is only available in the United States, as well as to raise awareness of rare diseases and the need for accessible treatments.
Gómez’s son, Tomás Ross, suffers from Duchenne muscular dystrophy, a genetic disorder characterized by progressive deterioration and weakening of the muscles.
The drug used to treat the condition costs about $3.7 million.
Gómez’s trip has lasted a little over a month and been closely followed by Chileans.
Walking next to her was Marcos Reyes, president of the Duchenne Families Chile Corporation and father of twins with the same illness.
In the midst of the high popular mobilization generated by Gómez and Reyes’ walk, the Ministry of Health held two meetings with them during their journey to the capital, both unsuccessful.
In a statement, the ministry recalled that the drug is not approved in Chile and maintained that the accelerated approval of the FDA "does not mean that there is evidence of clinical efficacy of the drug" and, therefore, "further studies are required" to evaluate its effectiveness.
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