Rare diseases and cancer care in focus during health care minister’s visit to New York

In connection with the High-Level Meeting on Universal Health Coverage, a side event was held entitled ‘Engaging the UN System and Member States to Achieve Universal Health Coverage for Persons Living with a Rare Disease: A Blueprint for Leaving No One Behind’, which focused on experiences, challenges and opportunities for people living with rare diseases. 

“The work with diagnosis, care, support and treatment of rare diseases is a priority for the Swedish Government and we, unfortunately, see that many patients do not receive the care and treatment they are entitled to today in Sweden. That’s why – following the change of government – we recently announced that we will begin work on developing a national strategy for people living with rare diseases,” stated Ms Ankarberg Johansson in her opening address at the event. 

On 16 December 2021, the UN General Assembly adopted the first-ever UN Resolution on ‘Addressing the challenges of persons living with a rare disease and their families’. The Resolution, proposed by Spain, Brazil, and Qatar and co-sponsored by 54 countries, was adopted by consensus and with the support of all 193 UN Member States. It is the first UN document to recognise specific challenges faced by people living with a rare disease and their families. In 2019, the UN General Assembly adopted the political declaration on universal health coverage, which specifically mentions rare diseases.

Study visit to highly acclaimed cancer hospital

Ms Ankarberg Johansson also visited the Memorial Sloan Kettering Cancer Center (MSK), which conducts both patient care and research in the field of cancer. The MSK has one of the world’s largest clinical research programmes, with more than 120 laboratories. It is considered to be one of the best cancer hospitals in the US. During her visit, Ms Ankarberg Johansson met with specialists and research leaders at the hospital. Ms Ankarberg Johansson discussed matters such as the Government’s efforts to update the national cancer strategy and cooperation opportunities between the MSK and Swedish university hospitals that also conduct cancer research.

A bilateral agreement between Sweden and the US on research, technological cooperation and cancer care has been in place since 2006. Since 2016, an implementation agreement has also been in place that describes the general framework to support and conduct high-quality research and the sharing of data to support the basic research necessary for the prevention, the facilitation of early detection and the treatment of cancer. The agencies in Sweden responsible for the agreement are the Swedish Research Council and the National Board of Health and Welfare. The responsible agency in the US is the Department of Health and Human Services. Both countries have expressed an interest in extending the agreement, and negotiations on an extended agreement have been underway since the first half of 2023.