Linking Research and Treatment !

What happens if you find you are suffering from some rare medical condition and it is highly likely that you are one of just a handful of people known to have this complaint ?  For a start, it will be difficulty to find a specialist doctor with the skill to start treatment and it is very likely that whatever medication that would be helpful is not listed on the Pharmaceutical Benefits scheme.

That is the medical nightmare that is all too common.  The unfortunate patient starts an almost endless search for relief from a medical system that is tuned to deal with diseases that are common across all sections of society.   In many cases, a cure is rumoured to exist in some other part of the world and the patient's wealth is decimated in a desperate search for treatment.

For the first time a specialist approach will be put in place by the government with the aim of directing patients to where research and emerging medicine may  offer the chance of relief.  Funding has been approved to appoint ten telehealth specialist nurses who will be located within charities that support people with rare and complex medical conditions.

This three year trial will encourage these specialist nurses to research medical breakthroughs of unorthodox treatments and in particular, clinical trials of new drugs and treatments that are specifically directed at newly discovered medical conditions.  It has the potential to deliver the " missing link " that connects patients with rare diseases to emerging tests that involved medical trials of promising new treatments.

We are encouraged by news stories where patients with a malignant disease have been included in clinical trials of a new procedure - with amazing results.  Often the drug involved would have a cost of thousands of dollars, but was provided free as part of the trial.  Hopefully, these telehealth nurses will be deeply involved in liaising with drug companies and medical researchers to evaluate what research is under way and how this can be coordinated with the rare medical conditions found in Australia.

This is the type of coordination that could bring promising results.  It opens a door to an area of expertise where the evaluation of what research is in progress across the world can be cross checked with people who need treatment for diseases outside the scope of conventional medication.  There is a mutual benefit for both the patient and the research company.

This is indeed a very new approach.  Specialist nurses who provide a conduit to emerging medical research should be a welcome referral by doctors faced with an ailment for which there is no known treatment.  For patients, it offers their last hope of a " medical miracle ".