Access to treatment for aHUS is a global issue. Many patients find themselves in countries where their health providers will not fund treatment of the complement inhibitors, eculizumab and ravulizumab. Other countries will fund all costs from a national funded pot.
In the USA there is a multi faceted approach to funding health care. It largely depends on a person’s private health insurance. Health insurance providers have different insurance products to suit individuals , or in some cases the individuals’ employers needs and ability to pay.
It is a complex issue which has rarely been mentioned in the aHUS community. It is a private matter, although for individuals it is some thing they may need to discuss and seek the best advice on.
This is true of those with aHUS as is it for other rare disease treatments. Often chronic and expensive treatments are stretching insurance coverage to the limit and beyond.
In February, aHUS alliance Global Action was approached by a Masters Degree student undertaking a genetic counselling course at University of Nebraska Medical Centre, USA. Her research interest is genetic rare diseases and their treatment costs including insurance coverage for those who suffer. She asked aHUS Global Action to provide a platform to seek participants for her study . It would take the form of an online questionnaire.
Her research topic stems from personal contact with people with rare diseases who have expressed a concern about paying for treatment. She is going to look at medical costs, how insurance coverage is retained, non-insurance source of funding and the lived experience of navigating a way through it all. She intends that the research will help bring awareness to the financial burden faced by those with rare diseases in the US.
Since then the student has had to work on the study project, its design and getting approval to do it. That has all now been done and the study is ready for the data collection stage. This will start in a few days and it is planned to be launched and be open for the whole of October. It is just for the USA patients and families.
This is where the USA aHUS community is needed once again. To provide the benefit of their experience to capture the overall current position not only faced by aHUS patients but also that faced by an extremely rare disease.
The call to action is imminent and will appear on the website and in aHUS social media very soon.
Article No. 462