A community-led program that has supported over 2,000 Australian families faces shut down because of the federal government's failure to renew funding.
The program has received just $1.56 million over three years to provide health system navigation and other support to families and patients as well as establish the National Patient Organisation Network.
The funding has been used to support almost 20,000 interventions for 2,000 Australian families over three years.
Many of these people are living with rare genetic disorders, including rare cancers, and the program has even been used as a model for others.
Kate Holliday is the chief executive of the Centre for Community-Driven Research (CCDR). She told BioPharmaDispatch the organisation will spend Rare Disease Day, which is today, contemplating the need to wind up the program.
The program's funding, which was a personal commitment of health minister Greg Hunt, expires in June this year.
The program was ironically developed following a suggestion from Minister Hunt.
Ms Holliday said, "A group of around eight organisations met with the minister, just to talk about challenges in the health system navigation, particularly for patients with complex care and rare disease.
"We did not go to him asking for funding. He actually asked us at the CCDR to develop a program and he even suggested calling it 'Patient Pathways'.
"Based on the minister's request, we put the program together and submitted the funding proposal, which was successful.
"The program even adopted the name he suggested," said Ms Holliday.
Yet despite such a significant role in its beginning Minister Hunt has failed to even respond to three recent letters from Ms Holliday about the future of the program. Department of Health officials have indicated no imminent decision on whether to renew the funding.
Ms Holliday said, "The program is based on positioning specialist nurses within patient organisations, so in the community, and that is the entire point. Patients regularly approach their representative group for advice and support. We thought there was value in ensuring they had ready access to a healthcare professional to provide guidance on the services available to them.
"These nurses are doing care coordination and system navigation but also a whole range of other nurse-driven interventions, including symptom management and those things you can do via telehralth."
Ms Holliday personally supports patients from Genetic Alliance, SWAN and Genetic Support Network of Victoria.
"These are people with rare genetic conditions," she said. "As an example, I will have families with a child diagnosed with a really rare genetic disorder. They come to me, often they have not had genetic counselling, so we have to go through what a deletion is, what does it mean, what is chromosome deletion?
"They are looking for help. Parents may have gone to pathology, had the genetic test, been handed the result and sent on their way. Some even come to us at the point where they are still searching for a diagnosis, so we are getting them into the right specialists so that they are not going around in circles, which is when newborn screening would be great. We could rule out a whole lot of things."
Ms Holliday said sometimes there is no treatment so the focus is on the development of a care plan with coordination across all healthcare professionals and support.
"We have already done two evaluations of the program and provided them to the Department of Health. They seem to have learnt something given other patient groups locally and internationally have adopted many aspects of our program."
Despite the two evaluations, the Department of Health has confirmed a plan to conduct its own evaluation. Minister Hunt ordered the evaluation in mid-2021 but has not even got underway.
"I have been speaking with them since November 2020, specifically on the fact we cannot just have a 'cold end' in June. We provide a health service. The government's own evaluation has not even started and we have no certainty. We have the next few months to make sure patients are taken care of and, unfortunately, we will not be in a position to take on too many new patients."
Ms Holliday said any decision to not renew funding means people who would benefit from the program will just go back to relying on primary care that is simply not constructed to deliver the support provided by 'Patient Pathways'.
"It is frustrating," said Ms Holliday, whose National Patient Organisation Network is also hosting its annual conference this week.
"Our goal was for this program to become part of the health system, particularly in disease areas where you cannot practically have a care coordinator located in every public hospital across Australia.
"That was our goal and that is essentially what we have proposed in our new funding proposal. We have included a model of what it will cost, based on volume, so it is not just a 'chunk' of money.
"It has been developed based on consultation with our wider network of patient organisations and their understanding of the need for telehealth nurses. It was transparent, it was open and equitable.
"In the end, we might need Minister Hunt's intervention or we realistically face starting the process of bringing this highly successful program that has been used by the government as a model for others to an end."