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Review: 10th KMSK Knowledge Forum Rare Diseases
THE GIRL WITHOUT DIAGNOSIS AND THE STRUGGLE WITH IV
As part of International Rare Disease Day (Feb. 28, 2023), the 10th KMSK Knowledge Forum of the Association for the Advancement of Children with Rare Diseases on the topic of "Insurance Benefits, Application and Enforcement" took place at the KKL Luzern on Feb. 25, 2023. The focus was on the struggle around insurance and support services illuminated from different perspectives. In a lively panel discussion between Martin Boltshauser, attorney, head of legal services, member of the management of Procap Switzerland, Irene Weber-Hallauer, social worker with a focus on illness and disability, Christina Schönholzer, affected mother of Mira, Dr. med. Tobias Iff, FMH Pediatrics and Adolescent Medicine, focus on Neuropediatrics Center for Child Neurology AG and Dieter Widmer, Managing Director, IV-Stelle Canton Bern (author of the book "Die Sozialversicherung in der Schweiz"), a gigantic flow of knowledge was achieved in just under three hours.
The KMSK Knowledge Forum was moderated by SRF journalist Daniela Lager. The main character of the 10th KMKS Knowledge Forum is a little four-and-a-half-year-old girl - Mira. Her story is representative of thousands of families whose child has a rare disease or no diagnosis at all. Just like Mira. The girl is severely developmentally delayed, cannot speak, walk or sit independently, and often cries for hours. There is no name for her symptoms, despite countless examinations and a genetic test. "Although genetics is making great progress, no diagnosis can be made for 40-50 percent of children," says pediatric neurologist and panelist Tobias Iff, MD. What this means for affected parents is told by Mira's mom and dad in a touching film by SRF, which was played right at the start of the Knowledge Forum.
No diagnosis - fewer insurance benefits
On the one hand, there is the great concern for their daughter and the daily burden of her complex care - on the other hand, there is the constant battle with the insurance companies. Because, where there is no diagnosis, there are no IV billing figures and consequently urgently needed aids are not financed. In Mira's case, for example, this is a standing board that is supposed to help her stand upright and is classified as a therapeutic device. However, this is only financed by social security if there is a corresponding birth defect. Tobias Iff explains that his hands are often tied here as a treating physician: "We work with the so-called birth defect list and see which paragraph the child fits into. If the child `only` has a developmental disorder, as in Mira's case, it cannot be assigned to any birth defect paragraph." Consequently, the IV does not have to pay.
Mira is not an isolated case!
Mira's case is exemplary for countless families who are confronted with exactly this problem. Martin Boltshauser has advised numerous families in his 32-year career as a lawyer at Procap* and says in his introductory presentation: "The burden is considerable for affected parents. They have to deal with the IV, they would have to know the legal texts and they have to deal with complex application forms." Information, a place to go or a universal guidebook are hard to find for rare diseases. Yet managing the various insurance and support services is already complex if the child has a "valid" diagnosis. However, in the absence of such a diagnosis, important IV benefits are eliminated.
"There is room for improvement in the implementation of the law," he said.
"This wouldn't really be necessary and I don't think it's in the legislator's mind," emphasized Dieter Widmer, executive director of the IV office of the canton of Bern. He is therefore also convinced that the many critical voices are less about the IV and more about the legislation. "It is undisputed that there is room for improvement in the implementation of the laws," Widmer said. For example, at the request of the Federal Social Insurance Office, the Federal Council could formulate said list in such a way that the focus is not on the diagnosis, but instead one can orient oneself on the various symptoms.
SRF journalist Daniela Lager, who moderated the event, grilled Widmer: "Wouldn't it be quicker if IV, as the enforcement authority, registered this need?" In his opinion, it could be difficult for the 26 IV offices in the cantons to agree on this - thanks to federalism.
Legal loopholes on the shoulders of affected families
Affected parents often have little understanding for such loopholes in the law. For them, it's a matter of "the bottom line," including financially: "Parents with a sick child often suffer loss of income because they have to reduce their workload or one parent has to give up work altogether," says Irene Weber-Hallauer, a social worker. Time and again, she experiences parents who, despite IV and health insurance, fall through the social cracks and ultimately have to rely on social welfare.
Promotionalism - a challenge also for school enrollment
The discussion on the subject of school enrollment also shows how complex the problem of rare diseases is. The first question is: regular or special school? The panelists agree that integration into a regular school is not necessarily the right solution. Experience shows that affected children sometimes have an easier time in a special school - here they have a sense of achievement and are not constantly confronted with what they cannot do. The problem is that, depending on the canton in which they live, there are no such programs. And: "As soon as it goes beyond the cantonal borders, it gets complicated," said Irene Weber-Hallauer. The culprit here is once again funding liberalism. As a result, services are often adapted to the available funds instead of the needs of the children, Martin Boltshauser explained.
Case management and other support options
So what would the experts advise (newly) affected parents to do? There was unanimity in the answers: parents should get support early on in dealing with the various agencies. What many don't know is that since 2022, IV agencies have to offer case management.
In addition, the digital knowledge platform of the Association for the Promotion of Children with Rare Diseases has been in existence since the fall of 2022 and bundles information about counseling centers and support services. "We address problems in dealing with rare diseases that are brought to us directly by the affected families. At the same time, we point out possible solutions and offer a hand in finding solutions ourselves - where necessary, also with financial support," says Manuela Stier, founder and managing director of KMSK.
By focusing on the transfer of knowledge, the support association on the one hand sensitizes professionals and at the same time empowers affected families to meet authorities, doctors and experts at eye level. "Affected parents should know what their rights and options are, and where it is worth fighting. Self-empowerment is central, as is the knowledge that you are not alone," said Manuela Stier.
Manuela Stier's presentation impressively illustrated what the Support Association for Children with Rare Diseases has achieved in the past nine years - thanks to a unique transfer of knowledge across all dialogue groups, the topic of "rare diseases" is being given a much greater voice at the political, media and social levels.
An important contribution to this is made, for example, by the five KMSK knowledge books, a total of 50,000 of which have been distributed free of charge to all dialogue groups. "We see one of our central tasks in bringing the stories of affected families to the public, drawing attention to their concerns and giving them a voice," says Manuela Stier. Because, in all their activities, Manuela Stier and the support association are always concerned with one thing: giving affected families a better quality of life!
Live streaming of the presentations and the podium
Speech by Martin Boltshauser, Attorney at Law, Head of Legal Services, Member of the Executive Board of Procap Switzerland
Presentation by Manuela Stier, Founder and Managing Director KMSK
KMSK Knowledge Forum 2023 complete
Knowledge platform KMSK for parents and professionals
The digital knowledge platform KMSK has been put online by the Support Association for Children with Rare Diseases together with the Zurich University of Applied Sciences ZHAW Winterthur, the HES-SO Valais, numerous competent experts and about 731 affected KMSK families, after a 2-year development period on 18.10.2022. This is freely accessible. The knowledge platform is based on the experiences and needs of affected families and professionals and helps them to cope more efficiently with the organizational, administrative and financial challenges. We are currently working on translations into French and English.
Digital knowledge platform link
5. KMSK Knowledge Book "Rare Diseases - Digital Knowledge Platform for Parents and Professionals
In the meantime, the transfer of knowledge is guaranteed on a broad level. Based on the new, freely accessible www.wissensplattform.kmsk.ch, the 5th KMSK knowledge book "Seltene Krankheiten - Digitale Wissensplattform für Eltern und Fachpersonen" (Rare Diseases - Digital Knowledge Platform for Parents and Professionals) with a print run of 11,000 copies will be distributed and sent to our dialogue groups on November 1, 2022. 14 affected KMSK families were interviewed and this is supplemented by the knowledge of 39 professionals.
Order free of charge Link