Oncologists may soon have access to an online database of non-PBS funded cancer drugs available under pharma company compassionate access schemes.
The National Oncology Alliance has mooted plans to build a secure online portal where pharmaceutical companies can upload information on access schemes that offer patients free or reduced cost access to innovative but expensive new cancer drugs not listed on the PBS.
The encrypted portal will only be accessible to clinicians specialising in cancer treatment via a secure log-in, thereby complying with national laws banning the advertising of therapeutic goods to the public.
National Oncology Alliance says the portal is needed to address barriers to clinicians obtaining information on access schemes, causing patients to miss out on potentially life-changing medicines.
In a submission to the TGA, the Alliance says that the lengthy and complex process of obtaining a PBS listing means that many innovative cancer drugs registered for use in Australia are not accessible to most patients because of their prohibitively high costs.
It notes that individual pharma companies offer new drugs through a variety of access schemes, but it is difficult for oncologists to keep abreast of them as each company’s program has different arrangements and they open and close at various times
It is particularly difficult for oncologists in regional and rural Australia to learn about the existence of such access schemes for their patients if they do not have contact with company representatives, notes the submission.
A major barrier has been pharmaceutical companies’ reluctance to share information with clinicians for fear it would be construed as “advertising” thereby breaching the TGA’s Advertising Code, the Alliance says.
“Clinicians are currently unable to securely, reliably, and quickly obtain information about access schemes. Such a situation is very concerning for the many patients that are paying hugely expensive out-of-pocket costs for medicines and missing out on these schemes – or are unable to access these schemes at all. Access schemes exist as a last resort for the far too many patients that fall through the cracks of our health system.”
Alliance spokesman Richard Vines says the portal will address these barriers, providing a one-stop-shop for clinicians on how to apply for access schemes that may be appropriate for their patients.
“I would suggest it’s well in the hundreds of patients who would benefit from clinicians being readily able to access this portal, and then making submissions to pharma companies,” Mr Vines told the limbic.
Pharmaceutical companies will be able to upload general information on their schemes but must steer clear of making statements that could be construed as advertising, he said.
Companies will not be able to view information uploaded by competitors, he added.
The National Oncology Alliance – which comprises representatives from medical oncology and research, patient groups and the pharmaceutical industry – is now seeking philanthropic or government funding to build the site.
Mr Vines says it is hoped the site will go live in 2019.
“This proposal serves a great public health need,” the Alliance says.