Frequently asked questions - Press
At TheSocialMedwork, we believe that individuals have the right to freedom of access when it comes to health.
How does TheSocialMedwork’s service work?
TheSocialMedwork is a registered medical intermediary providing access to the latest approved innovative medicines under the Named Patient regulation, a global early access import service for patients and their physicians. To date TheSocialMedwork has supported patients and physicians in over 85 countries.
Why was TheSocialMedwork created?
TheSocialMedwork was founded to address disparities our co-founders observed firsthand. CEO and founder, Sjaak Vink, lost friends to cancer and ALS in a very short period of time. For COO Katrin Schepp, the first class treatment her father received for his lung cancer was the catalyst which launched her fight against the inequalities in access to treatment. The third founder and biomedical pioneer Jamie Heywood lost his brother to a long fight with ALS. The fourth founder, Bernard, was himself diagnosed with ALS in 2010. Their research led to the realisation that most countries have existing legal and ethical processes in place that enable patients to import elsewhere approved medicines from overseas for personal use. .
Why is TheSocialMedwork’s service necessary?
Healthcare access around the world is inequitable. Delays and variation in medicine approvals from one country to the other cost lives. We provide physicians and their patients with an efficient, ethical, transparent and legal pathway that allows them to access the treatment choice that best works for them, regardless of where they live.
What world does TheSocialMedwork envision?
TheSocialMedwork envisions a world without red tape or bureaucratic hurdles, a world with one global approval system and an open door to medicines and health for everyone, no matter who they are or where they live.
Is it currently legal for a patient to access an experimental medicine that is not yet approved in a patient’s country of residence?
Most countries have a Named Patient or Personal Import regulation which enables patients to import medicines from abroad that have not yet been approved in the patient’s country. This can only be done with a physician's prescription and, depending on the country, with some additional requirements. Under the Named Patient regulation, we can legally support patients to import a medicine that is not approved in their country of residence.
Under this regulation, there are four conditions which in most countries need to be adhered to:
Under this regulation, there are four conditions which in most countries need to be adhered to:
- The medicine must have market approval in another country and is not yet approved or available in the patient’s country of residence.
- There is no equal alternative on the market in the patient’s country of residence.
- The medicine is for the patient’s personal use only.
- The patient has a prescription from their treating physician in their country of residence.
Is it ethical for a patient to access an experimental medicine that is not yet approved in their country of residence?
TheSocialMedwork commits to the Ethical Principles of the World Medical Association and operates ethically and transparently enabling patients and their physicians the freedom to choose the best treatment for them. Regulatory bureaucracies cause unnecessary delays which cost lives. By operating under the Named Patient regulation, we provide patients and their physicians with a legal bypass as a solution to overcome this unfairness.
Does TheSocialMedwork source medicines directly from the manufacturers?
TheSocialMedwork sources medicines and treatments from a global network of trusted and registered suppliers under the supervision of regulatory bodies and health authorities.
How does TheSocialMedwork ensure the quality of the medicines?
TheSocialMedwork is registered in The Hague, The Netherlands and is GDPR audited and compliant and commits to protect the confidentiality of all customer data and to not divulge any information in any form, except when authorised by the patient or required by law.
Does TheSocialMedwork work directly with a patient’s physician?
It varies per case. In some instances, we communicate directly with the patient’s doctor and in others with the patient’s carer or the patient directly. It is only after a joint decision between the physician and their patient that we are able to support. A patient’s physician must fully recommend and support the choice of treatment. The prescription that we require to be able to legally and ethically support a patient solidifies the physician’s knowledge and support of the elsewhere approved treatment in question.
Who is liable for a patient’s side effects from taking an experimental medicine?
A physician is medically responsible to monitor the treatment course of their own patient. This is why we are only willing and able to support patients with medicines access with the treating physician’s supporting prescription. We act on behalf of the patient as well as their treating doctor to empower them to access a medicine that is not approved where they live. Our responsibility lies in ensuring the sourcing, shipping and delivery of the medicine is done safely and legally.
How has TheSocialMedwork benefited patients?
TheSocialMedwork has helped tens of thousands of patients across more than 85 countries to access life-improving treatments and medications from around the world earning a 5 out of 5 stars patient review score on Google and Facebook.
Does TheSocialMedwork provide patients with medical advice?
The patient’s treating physician is the only qualified party to provide medical advice specific to their patient’s case and medical history. We highly value the physician-patient relationship; our role is to support this joint decision making by providing information on the latest approved medicines from around the world as well as access to these medicines when requested by both a patient and their treating physician.
How does TheSocialMedwork ensure that the system is not abused by people with drug dependency problems?
TheSocialMedwork supports patients with debilitating illnesses who have a valid prescription from their treating physician in their country of residence. As part of the process, we also work closely with the treating physician to ensure the safety of each patient. Given the nature of the process required to source these medicines, it is difficult to forge, so we don’t experience instances of individuals trying to access medicines using our services who aren’t truly in need.
How does TheSocialMedwork determine the cost of each medicine?
The base cost of each medicine is set by the manufacturer. TheSocialMedwork does all of the legwork in ethically and medically safely sourcing, importing and delivering medicines to patients and their physicians as quickly and easily as possible. In taking on this challenge, we ask for a Named Patient Support fee, which helps to cover the costs incurred and allows us to offer our services. Patients must also consider shipping costs and local taxes and duties which may be incurred and differ in each country. Any profits we make will then be reinvested into further improving and growing our patient support service, and expanding our medicines portfolio and partner network globally. We strive to cut out as many middle men as possible and always aim for the best affordable prices possible.
What happens to patients who need but can’t afford the medicines TheSocialMedwork provides?
TheSocialMedwork cannot change the economics of healthcare access today but we can with the right transparent and ethical process support patients and their physicians with access to treatments that can then bring local transparency and pressure so that those who have the power to regulate can make the world more fair and equitable.
Can a patient claim the cost of the medicine via their country's healthcare system?
Some countries have a government fund providing financial assistance for citizens to access medical treatment abroad. The best thing would be to check with their country's own health ministry. We also highly recommend checking out local philanthropic foundations, patient blogs, communities and patient organisations to find out more about local options. In some countries and even in individual cases, health insurance companies may partially or fully cover the cost of the medicine. We recommend checking this directly with the patient’s health insurance company. Some patients use crowdfunding options like GoFundMe to fund their medical treatment.
How many people has TheSocialMedwork supported so far?
In the last five years, TheSocialMedwork has supported Individuals from 175 countries with information or access to newly approved medicines for several diseases including but not limited to cancer, ALS, MS, Duchenne, Cystic Fibrosis and SMA.
How can TheSocialMedwork’s registration be verified?
TheSocialMedwork is registered in The Hague with the Dutch Ministry of Health (registration number 6730 BEM) as an independent medicines intermediary. Our registration can be found here on Farmatec's website. Farmatec is the body within the Dutch Ministry of Health which is responsible for providing and auditing pharmaceutical permits, approvals, exemptions and registrations for medicines and medical devices in the Netherlands. By clicking the link you can find several documents called “Overzicht geldige BEM-registraties XXXX” which translate to “Overview of valid BEM registrations XXXX” You can find TheSocialMedwork on page 2 of each of the documents.
How is TheSocialMedwork’s impact audited?
How is TheSocialMedwork funded?
As a social impact enterprise, TheSocialMedwork is funded by investors who share the company’s vision to make healthcare equitable and give every patient access to the best medicines and treatment options. The first angel investor was acclaimed Silicon Valley activist-investor Esther Dyson (pioneering healthcare innovator, board member of 23andme, and one of TIME’s Ten Most Influential Women in Technology) and later joined by Rogier van Vliet (former board member of conservation focused Oceana and supporter of the Global Investigative Journalism Network) as well as members of the Change Club.
What has been the impact of TheSocialMedwork to date?
- We can deliver any medicine anywhere in the world in an average of 20 days.
- We’ve shipped to 87 countries.
- We’ve supported patients from 175 countries with questions and or products.
- We have over 178 products on our portfolio.
- Every month over 18,000 patients, carers and doctors visit our website for information and support.