Search by Keyword ...
Menu
Quick Links:
Close Form
Login
繁
简
Login
Email
Please enter your email
Please enter a valid email address
Password
Please enter a password
Login Failed
Forgot your password?
Login Failed
Facebook Login
Login
New to Lifewire? Sign Up!
Forgot your password
Login Email
Sorry, we don't recognise that email address
Please enter your email
Please enter a valid email address
Submit
Sign Up
First Name (Required)
Please enter your firstname
Last Name (Required)
Please enter your lastname
Email (Required )
Please enter your email
Please enter a valid email address
This email has already been registered
Password (Required; 6 to 20 characters)
Please enter a password
Confirm Password (Required)
Please confirm your password
Passwords do not match
Avatar (Please provide a square image)
The information collected will be treated as strictly confidential and the information related personal date will be handled in accordance with the requirements of Personal Data (Privacy) Ordinance (Cap. 486, Laws of Hong Kong)We shall use your personal data for issuing receipts and communications.
Lifewire Foundation may use your contact information for the purpose of communications, fundraising campaigns promote, volunteer recruitment and survey administration.
You may choose to stop receiving such information at any time; please inform us by post or email to info@lifewire.hk
I
Agree
Disagree the above arrangement.
Submit
Already have an account? Login
Thanks for signing up.
You'll be receiving confirmation email soon.
About Lifewire
About Us
Governance Bodies
Contact Us
FAQs
Annual Report
Causes & Campaigns
Campaigns
Causes
Create campaign
Support Lifewire
How to Donate
Join Us
Volunteering
Lifewire's Donation Box Locations
Social Services
Corporate Social Responsibility (CSR)
Wedding Favour Donation
100 Day "Full Moon" Celebration Favour Donation
Life Education
Business-School Nurturing Future Scheme
What's New
Latest Activities
Inspiring Story
Video Gallery
Publications
Health & Lifestyle
Star Appeal
Columns
Celebrity Promotion
What's New
Health & Lifestyle
繁
简
Login
Login
Sign Up
About Lifewire
About Us
Governance Bodies
Contact Us
FAQs
Annual Report
Causes & Campaigns
Campaigns
Causes
Create campaign
Support Lifewire
How to Donate
Join Us
Volunteering
Lifewire's Donation Box Locations
Social Services
Corporate Social Responsibility (CSR)
Wedding Favour Donation
100 Day "Full Moon" Celebration Favour Donation
Life Education
Business-School Nurturing Future Scheme
What's New
Latest Activities
Inspiring Story
Video Gallery
Publications
Health & Lifestyle
Star Appeal
Columns
Celebrity Promotion
pgview
/CheckIfDuplicatedEmail
/Lang
Share
15 Mar 2019
【藥物名冊擴範圍 增撥款】罕見病患者受惠幾多
醫院管理局於3月13日公布擴大藥物名冊範圍,計劃將8類藥物由自費藥物轉為專用藥物,包括罕見病結節性硬化症及多發性硬化症的藥物。
以結節性硬化症為例
政府增撥款:451萬元/年
每名患者可獲資助:23萬/年
受資助患者:19名
用藥門檻:患者腦部出現星型腫瘤或腎臟腫瘤達3厘米
結節性硬化症患者家屬怎樣看?
結節性硬化症協會主席阮佩玲:
"她指本港有284名結節性硬化症患者,新措施僅涵蓋19人,屬原本申領撒瑪利亞基金資助的患者。她批評當局僅「將錢由左邊放進右邊口袋(作資助)」,患者只是省卻每年填申請表的步驟,門檻不變無助改善大部分患者病情。
她續指出,現時協會與藥廠合作試藥,兩年內資助15名4個月大至21歲的患者用藥,「一個民間組織都支持到15人用藥,為何這麼大的政府只支持到19人」……"
立法會議員張超雄:
"醫管局的專家小組早已在年初接納為出現抽筋的結節性硬化症患者用藥,惟仍須待相關委員會批核,料合乎資格的患者明年才有藥可用。他認為當局的進度緩慢,當局應簡化及加快程序。"
期望政府踏出這一步只是起步,不但可以引起更多市民關注,未來還可以加快速度和力度,讓更多罕有病患者得到適切的治療。
資料來源:
文滙報
、
明報
了解更多
透視罕見病:結節性硬化症(一)
滿腦腫瘤 罕病少女以畫回饋社會
View Comment
(0)
You must be a logged in contributor to comment.
You may be interested to know...
28 Dec 2018
The longer babies breastfeed, the more they achieve in life – major study
22 Feb 2018
10分鐘自製賀年菓飴
15 Feb 2018
Lifewire仝人向各位拜個早年!
View More Hot Topics
Download Lifewire News
View All Publications
Search by Keyword ...
Stay tuned to our latest News!
Subscribe our Newsletter
Your Name
Your Email
The information collected will be treated as strictly confidential and the information related personal date will be handled in accordance with the requirements of Personal Data (Privacy) Ordinance (Cap. 486, Laws of Hong Kong)We shall use your personal data for issuing receipts and communications.
Lifewire Foundation may use your contact information for the purpose of communications, fundraising campaigns promote, volunteer recruitment and survey administration.
You may choose to stop receiving such information at any time; please inform us by post or email to info@lifewire.hk
I
Agree
Disagree the above arrangement.
Submit
Please enter your name
Please enter your email
Please enter a valid email address
This email has already been registered as a subscriber
Close
Close