Interview: Perspective from patient advocates in Sweden

In Market Access by Freya Smale

As part of a series of interviews conducted with leading industry experts in the run up to the World Orphan Drug Congress in Geneva, Total Orphan Drugs was delighted to sit down with Britta Berglund, RN, Ph.D, Rare Diseases Alliance, Sweden. Total Orphan Drugs would like to take this opportunity to thank Britta Berglund, RN, Ph.D for speaking to us.

Scandinavia has a growing rare disease advocacy network according to Britta Berglund, RN, Ph.D

Britta Berglund, R.N., Ph.D. has seen many changes over the years as a patient advocate in Sweden. In 1992 Berglund founded the non-profit Swedish Ehlers-Danlos syndrome National Association, which connects EDS patients and their families. The group also sponsors a scientific council and an online support forum.

“We are making a difference in politics,” said Berglund. “I have been very much involved in the Ehlers-Danlos association, which I founded in 1992. For that disease there is no treatment, which is frustrating. When families and patients understand there is no treatment, they want to know what to do.” Patients and families want to know what kind of occupational and physical therapies are available so they can better cope. “You have to live your life.” Berglund said.

It is essential to educate health personnel about rare diseases. “We also need a better methodology for evaluation of drugs and evaluation of treatments.” said Berglund. “I think that industry should work more closely with patient associations. Many diseases in the Rare Diseases Alliance—about 50 diagnoses—cannot be diagnosed by testing. We need much more research on rare disorders, and ways drugs can be repurposed for other diseases.”

According to Berglund, bringing patients as partners into the drug development process for rare diseases remains complicated. There is a power and knowledge imbalance in working with laypeople who may not fully understand the language and scientific concepts used. “It is not easy for patients to get involved as you have to be knowledgeable and use the language that is used in that area.” said Berglund. “Patients are quite normal people who have enough to do with their sickness and can therefore sometimes be difficult to be a spokesperson.” In Sweden, children under 18 are protected under privacy laws, so companies and researchers must work with parents who serve as their spokespeople. Berglund wants to emphasize that people with a disease who need a drug have access to it. “And that is not always the case here because it is mostly more expensive drugs.” said Berglund. “Sometimes there is a question about who is going to pay.”

In Sweden the Dental and Pharmaceutical Benefits Association (TLV), an official government body, evaluates drugs and decides which get reimbursement and at what level. But according to Berglund many countries in Europe can’t afford these drugs, so differential pricing is needed. Sweden is in the process of establishing centers for rare diseases at university hospitals with competencies in several rare diseases. The centers are sponsored by various regions and counties within Sweden. The intent is to provide a “home” to patient groups and to connect them with their healthcare specialists. Other Scandinavian countries such as Norway, have already established center networks.

Berglund gives advice to other patient advocates:

1. The first advice is not to give up.

You have to be persistent and keep your pace and focus. Patients need to be very well informed to work in policymaking and be trained in how to how to address politicians, healthcare and industry.

2. Institutionalize your knowledge

Establish internal bodies of knowledge and institutionalize the knowledge you accumulate.

Healthcare has been working with hierarchies for so many years. Reorganizing rare disease care into networking centers can help the sharing of knowledge and accumulated wisdom between patients and partners.

3. Understand your priorities.

Patients also must be familiar with their own diseases and what choices they have to make. And of course industry must pay for patient representation. Today that is not clear how that is organized. For example, patients must have the same status as healthcare workers, for example as healthcare workers can attend meetings on work time—patients should be able to do so as well.


imageSpecial thanks go to Wendy Wolfson who conducted the interview on behalf of Total Orphan Drugs.

Wendy Wolfson covers innovations at the intersection of medicine, science and healthcare as a columnist for Chemistry & Biology, a publication of Cell Press. She has contributed to magazines including Science, Nature Biotechnology, the Lancet, and Red Herring. Her work can be found at and she can be contacted at

Read more interviews in this orphan drug series
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How to deliver value to patients
Perspective from patient advocates in Sweden
Interview: Surmounting barriers to patient access
Unique opportunities to develop cures for orphan diseases in the Middle East shouldn’t be overlooked
Where do the current and future challenges lie in bringing new orphan drugs to market?
Bringing Biotech Spirit to a Non-Profit Environment
Paving the way for a whole new medical paradigm
Tailoring your reimbursement strategy, step by step, country by country
An Interview With Pfizer on the Orphan Drug Industry: Part I
An Interview With Pfizer on the Orphan Drug Industry: Part II
An Interview with the Chair of the IRDiRC
An Interview with an Orphan Drug Payer