PatientView | Hong Kong insights from Patient Groups: A seat at the pricing table

Patient group voices

interactions

We suggested a big pharmaceutical company to reduce its selling price as it is not affordable by the patients.

Regional patient-advocacy group

interactions

On more than one occasion over the past year, recommendations have been submitted to the regulatory authority responsible for pharmaceutical pricing in Hong Kong, proposing that medicines with existing approved indications be permitted to register new indications under a special licensing arrangement.

Regional transplant patient group

actions & advocacy

As an orphan medicinal product for a rare disease, the cost is prohibitively high. Strong representations to this effect have already been made to the Government, the HA [醫院管理局 – Hospital Authority], and the relevant pharmaceutical manufacturers.

Regional rare-disease patient group

Patient group goals

The percentages below highlight how the 14 patient groups interact with regulators and advocate for patient interests. As respondents may be represented in more than one area, percentages may not total 100%.

interactions

How patient groups interact with drug regulators

Find out what the goals mean

2 mentions

actions & advocacy

How patient groups get access to medicines

Find out what the goals mean

5 mentions

3 mentions

1 mention

English text	Therapy area	Category	Patients reached	Geo reach	Regulatory engagement	Respondent
On more than one occasion over the past year, recommendations have been submitted to the regulatory authority responsible for pharmaceutical pricing in Hong Kong, proposing that medicines with existing approved indications be permitted to register new indications under a special licensing arrangement.	Transplants > Transplants: liver	Regulatory partnership > Working with regulatory bodies	5,000	Regional	Regularly	115046959426
On more than one occasion over the past year, recommendations have been submitted to the regulatory authority responsible for pharmaceutical pricing in Hong Kong, proposing that medicines with existing approved indications be permitted to register new indications under a special licensing arrangement.	Transplants > Transplants: liver	Regulatory partnership > Participate in Health Technology Assessment (HTA) and reimbursement reviews	5,000	Regional	Regularly	115046959426
As an orphan medicinal product for a rare disease, the cost is prohibitively high. Strong representations to this effect have already been made to the Government, the HA [[醫院管理局 – Hospital Authority], and the relevant pharmaceutical manufacturers.	Rare > Rare diseases: most types	Impacting policy and legislation > Influence healthcare policy and legislation	100	Regional	Rarely	115017299676
We suggested a big pharmaceutical company to reduce its selling price as it is not affordable by the patients.	Patient advocacy > Patient advocacy	Pricing and affordability advocacy > Advocate for fair medicine pricing	5,000	Regional	Sometimes	115004724749
The dual-pricing fees are prohibitively high.	Not specified > Not specified	Pricing and affordability advocacy > Advocate for fair medicine pricing	1,000	Regional	Sometimes	115053340704
We suggested a big pharmaceutical company to reduce its selling price as it is not affordable by the patients.	Patient advocacy > Patient advocacy	Pricing and affordability advocacy > Call for reduced selling prices from manufacturers	5,000	Regional	Sometimes	115004724749
We suggested a big pharmaceutical company to reduce its selling price as it is not affordable by the patients.	Patient advocacy > Patient advocacy	Pricing and affordability advocacy > Tracking and monitoring drug pricing/drug shortages	5,000	Regional	Sometimes	115004724749
On more than one occasion over the past year, recommendations have been submitted to the regulatory authority responsible for pharmaceutical pricing in Hong Kong, proposing that medicines with existing approved indications be permitted to register new indications under a special licensing arrangement.	Transplants > Transplants: liver	Pricing and affordability advocacy > Advocating for inclusion of product in reimbursement lists/national formularies	5,000	Regional	Regularly	115046959426
We have addressed the issue of treatment options to the health authority.	Visual impairment > Retinal diseases	Improving access pathways > Facilitate equitable access to medicines/healthcare	1,000	Local	Sometimes	119068473108
The cost of rare disease medicines classified as orphan drugs is extremely high.	Rare > Rare diseases: most types	Improving access pathways > Improving access to rare/ultra-rare therapies	100	Regional	Rarely	115017299676
As an orphan medicinal product for a rare disease, the cost is prohibitively high. Strong representations to this effect have already been made to the Government, the HA [[醫院管理局 – Hospital Authority], and the relevant pharmaceutical manufacturers.	Rare > Rare diseases: most types	Improving access pathways > Improving access to rare/ultra-rare therapies	100	Regional	Rarely	115017299676
The pricing of so-called 'orphan drugs' — medications designated for the treatment of rare diseases — is prohibitively expensive.	Neurological > Neurofibromatosis (NF)	Improving access pathways > Improving access to rare/ultra-rare therapies	100	Regional	Rarely	115018622259

Hong Kong

Survey insights

Patient group voices

Patient group goals

How patient groups interact with drug regulators

How patient groups get access to medicines

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