Chow’s letter, published in local media, described her difficulties in daily life because of the disease and reiterated her hope for the government to accelerate the introduction of the drug.

Earlier this month, at a patients’ group rally, Lam had personally received a proposal by Chow calling for the drug to be available locally.

“Dear Josy, thank you for your open letter to me today,” Lam said in her Facebook post. “Once again, I express my concerns for you and patients like you who suffer from SMA, and your anxiety waiting for the introduction of the new drug.

“The Secretary for Food and Health has already contacted the drug manufacturer and I will see to it personally. Please rest assured that we will put in our best effort.”

Hong Kong Chief Executive Carrie Lam promises to try to secure treatment for rare disease sufferer

In the post, Lam said she finished reading Chow’s proposal in one go, praising the plan as “rich in information” and of “extremely high standard”. She also described Chow and her mother as “strong and perseverant”.

In her open letter, Chow said she finished the proposal in almost four months, assisted by her mother, as she typed much slower than others because of her physical limitations.

On Sunday, Undersecretary for Food and Health Dr Chui Tak-yi said the government had met the pharmaceutical company once and expected it to provide the drug soon for patients in the city. But Chui said there was still no timeline for this process.

The cost of the drug per patient is about HK$6 million in the first year of treatment and HK$3 million annually in subsequent years.

There are an estimated 85 SMA patients in the city, with 20 of them suffering from the most severe form of the disease and requiring frequent intensive care in hospital.

For Lam's action and support, it is encouraging, but Hong Kong still have a lot of rare disease sufferers are still waiting for government support, such as Rett Syndrome, Tuberous Sclerosis Complex, Mucopolysaccharidoses and so on. Hope the government can assist on the needs of rare disease patients and their families, helping them solve the problem of expensive drugs, make them get more appropriate treatment as soon as possible.

Source: SCMP