Breaking down barriers to sourcing life-saving medications

International Hospital speaks to Sjaak Vink, CEO and Founder of TheSocialMedwork about the organisation and how it is helping patients source medications unavailable in their country of residence.

International Hospital: What is TheSocialMedwork?

Sjaak Vink: TheSocialMedwork is a social impact organisation that helps patients access new, innovative medicines that are not readily available in their country of residence. We are a registered, independent medicines intermediary which facilitates access to these treatments, making them available to sufferers of chronic, life-threatening and terminal illnesses, and are currently helping patients across the Middle East and around the world.

IH: When was it set up?

SV: TheSocialMedwork was founded in 2015 by myself, alongside James Heywood, Bernard Muller and Katrin Schepp. I already had experience in healthcare innovation, specifically when it came to linking patients to necessary treatments; my co-founders either had similar experiences, or related to the cause on a personal level.

IH: Why was it set up?

SV: TheSocialMedwork was set up following a series of devastating personal losses for each of us founders. Following extensive research, it quickly became apparent that many of our losses could potentially have been avoided, had access to newly approved medicines and treatments been globally available, rather than governed by local jurisdictions which open the door to widespread disparity.

For me, the journey of TheSocialMedwork began when one of my close friends passed away only a couple of months before a medication was made available in Europe, even though it had been available in the USA for several years. Because it wasn’t readily available in Europe, neither he, nor his physician, were able to get their hands on the medication, so we’ll never know if he would have benefited from it and if it could have saved his life.

Already an entrepreneur at the time, I was so frustrated by the situation that I had to act: it was devastating to think he could potentially still be alive, and that there was a medicine out there that may have saved his life, if it wasn’t for a matter of bureaucratic red-tape. I knew that if we had gone through this, then it must have happened to countless people too, and that there would be plenty of others suffering the same injustice around the world.

The other founders have also faced similar issues, with lawyer Katrin springing into action because of her father fighting cancer; scientist Jamie lost his brother to a long fight with ALS, and entrepreneur Bernard himself was diagnosed with ALS in 2010.

It led us to uncover that most countries actually have existing legal processes in place which enable patients to import approved medicines from overseas for personal use. This discovery ultimately resulted in the launch of TheSocialMedwork, which now works tirelessly to aid in the treatment and improvement of quality of life for patients all around the world. It’s our belief that if patients are already battling a severe and often debilitating illness, they shouldn’t have to fight to get the best treatment too.

IH: Where is it based and what countries does it operate in?

SV: TheSocialMedwork is based in Amsterdam and registered with the Ministry of Health (registration number 6730 BEM) in The Hague, however the operation spans a global remit, with medicines and treatments being sourced from across the world and then delivered to patients globally in other locations. To-date, TheSocialMedwork has helped in matching tens of thousands of patients, in over 85 countries, with the treatments they require. Our mission is to break down the geographical barriers of access to medicines, so we look at our operations as borderless too.

With regards Europe, a recent study by professor Carin A. Uyl-de Groot of the Erasmus university, has shown that medicine approval delays in Europe cost many lives every year. For some European countries like The Netherlands, it can take up to two years for a newly approved American medicine to become registered and available locally. This means that there are thousands of underserved European patients who do not have access to the latest medicines due to where they live.

IH: How does it operate?

SV: Any individual who has been diagnosed with a life-threatening illness can visit to request the latest treatments available to help fight their disease. Each individual case is taken on its own merits and then assisted by our Patient Support team, who provide access to new medicines under the Named Patient regulation, which is an early access import scheme, available in almost every country in the world. Unfortunately, it is not widely known, yet is the key to unlocking access for doctors and their patients to legally and safely import an elsewhere-approved treatment into their country of residence and give them a chance to fight their ailment.

IH: From where are your medications sourced?

SV: We source the medications and treatments which patients require directly from manufacturers, or from a high-end network of American and European-based sourcing partners.

IH: Can you explain briefly the medicines approval process in Europe?

SV: Many new medicines are registered in the United States first before reaching Europe. Registrations in Europe are then done firstly by European Authorities’ approval agency EMA and secondly, after EMA-approval, by the local approval agency of each individual European Member State. In The Netherlands for example, this is done by the CBG. Once the registration in a Member State is complete, local pricing and reimbursement negotiations take place. These long approval procedures and price negotiations amount to a delay of several years for life saving medicines, whilst patients in urgent need are waiting for the medicine to become available where they live.

IH: Why should patients sign up to TheSocialMedwork?

SV: Unfortunately, there will be people reading this who are truly exasperated by the lack of options available to them as a patient, to someone they love, or available to their patients as a treating physician. Fortunately, for those people, they may be having an ‘eureka’ moment as they read these words, and they’ll reach out to us and we can help find an answer to their needs. TheSocialMedwork can help people who have serious diseases and have been told that they are out of options or that limited options are available to them, particularly in their country ofresidence, or that they’ll have to wait several years for a treatment to be available to them. With access to all of the listed, approved and latest medications across the USA and Europe, TheSocialMedwork team takes on the hard and complex aspects of sourcing these treatments so that patients and their doctors can focus on fighting the disease, and not waste valuable time and energy on overseas sourcing and logistics. As the only patient support team in the world who has the experience in safely and legally shipping medicines to patients in over 85 countries around the world, patients and treating physicians will know that they’re in safe hands.

Particularly now in the COVID era of travelling restrictions and lockdowns, patients who might previously be used to travel for treatment and medications abroad are currently at even higher risk, making the unique service TheSocialMedwork provides even more valuable and crucial than ever.

IH: Are there any restrictions on what medications you can ship?

SV: Using the Named Patient regulation, once a medicine for a chronic, life-threatening or debilitating illness is approved – in any country around the world – we are able to legally and safely source and ship it to the patient in whichever country they reside. A patient uses their personal import allowance to receive the medicines they need. Our team personally guides them throughout the process.

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 need to be adhered to:

  1. The medicine must have market approval in another country and is not yet approved or available in the patient’s country of residence
  2. There is no equal alternative on the market in the patient’s country of residence
  3. The medicine is for the patient’s personal use only
  4. The patient has a prescription from their treating doctor in their country of residence

When these conditions are met, we then consider every prescribed request and its individual dosages and parameters – with each medication and each destination having its own nuances – including that some medications require for example constant refrigeration. We only use trusted logistics partners who are experienced in safely transporting medications for the final leg of the process to get the medication in the hands of the person in need.

IH: How do you ensure that the system is not abused?

SV: We work in the niche area of aiding patients with debilitating illnesses, and only support patients who have a valid prescription from their treating doctor in their country of residence. As part of the process, we also work closely with the treating doctor to ensure the safety of each patient. Additionally, given the nature of the process required to source these medications, it’s a difficult process to forge, so we don’t experience instances of people trying to access medications using our services who aren’t truly in need.

IH: Are there any significant cost increases to the medications due to shipping, duty, administration, etc?

SV: The base price of each medication is dictated by the manufacturer, and we do what we can to get the very best price from them in order to best serve patients.

TheSocialMedwork does all of the legwork in safely sourcing, importing and delivering medications to patients as quickly and easily as possible – so the patient can focus on looking after themselves and not have the added stress of niggly research, paperwork and logistics. 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, local taxes and duties which may be incurred and differ in each country, with TheSocialMedwork’s experts helping to advise on this and navigate any issues for a streamlined process.

IH: Can you give some examples of how TheSocialMedwork has benefited patients?

SV: TheSocialMedwork has helped tens of thousands of patients across more than 85 countries to access life-improving medications. We have supported European patients by enabling access to medicines from the US for several types of cancer, for neurological diseases like multiple schlerosis and for rare diseases like spinal muscular atrophy and cystic fibrosis. Additionally, we have supported European patients to access medicines from other countries like Japan for diseases like amyotrophic lateral sclerosis. In many cases, this has allowed patients to enjoy a higher quality of life and allow them to spend more quality time with their loved ones. As an example, we have an ALS patient who resides in the UAE who requires medication which isn’t yet available in the Middle East. Even when travelling to his home country, and during these times of COVID, we’ve been able to supply him with the medication he needs. In the last two years since TheSocialMedwork began sourcing his treatment, his doctor has reported a slowing in the progression of his illness, which is great news for his ongoing quality of life. He has told us how thankful he is that the power has been put back in his hands, both in his ability to fight the disease and to ‘make the most’ of his situation.