Being diagnosed with any serious condition can be scary, overwhelming, and full of unknowns. For those who are diagnosed with a rare disease such as Duchenne muscular dystrophy, spinal muscular atrophy, or multiple sclerosis, adjusting after diagnosis can be especially overwhelming. It can be difficult to find the information you need simply because there aren’t many other people in the world living with what you’re dealing with. Organizations which offer support can be hard to locate and trying to research treatments, clinical trials, and health services can be confusing and overwhelming.
The reality of the matter is, most healthcare systems are best equipped to handle common diagnoses.
Recognizing the agony that rare patients can go through after diagnosis, the Australian government has initiated a new pilot trial which aims to provide patients easier access to care and support, eliminating some of their burden.
This trial is being funded by the Australian federal government for a duration of three years, starting in May of 2019. It was created as a part of their Primary Health Care Development Program. In essence, it will place 10 telehealth nurses at ten different charities who specialize in rare diseases. These nurses will help to connect patients to information, services, subsidies, clinical trials, and treatment options. They may provide information on new emerging technologies, supportive services for mental health, homecare options, information on specialists, or the latest clinical trials recruiting for their condition.
The government is co-ordinating this trial with the International Centre for Community-Driven Research (CCDR).
The goal is that patients will immediately be provided access to the information which could be most valuable to them. Too often they receive this type of information when they’ve already been living with their disease for a long time.
Since local non-profits are often the first point of contact for newly diagnosed patients, this trial aims to meet patients where they are, amplifying the support they receive.
Eight different organizations comprise the steering committee for this trial. They include MS Australia, Lymphoma Australia, Rare Voices Australia, Hearts4heart, Muscular Dystrophy WA, Unicorn Foundation, Save Our Sons Duchenne Foundation, and SMA Australia. These organizations will decide which nonprofits (of those who are invited to apply) will be given a grant to participate in the trial. The CCDR will then distribute funding to these organizations.
Dr. Holiday, Chief Executive of the CCDR, addresses the selflessness of these organizations in stepping into this role. She says that they easily could have applied for the grant themselves, but instead they chose to open the program up to other non-profits who also have services to contribute to rare disease patients.
All charities involved in this trial will work with the CCDR to design a specific protocol that the telenurses should follow when working with people with rare conditions.