Melbourne mother says her medical insurer won't cover the treatment that could save her life
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Zohreh Sajjad and her husband are trying to raise funds for expensive CAR T-cell therapy after their insurance provider said it would not cover it.
Melbourne resident Zohreh Sajjad has been diagnosed with an aggressive cancer but her health insurer, Medibank, is refusing to pay for the treatment that will give her the best chance of surviving.
The 49-year-old Iranian woman has already undergone chemotherapy and radiation since being diagnosed with lymphoma last year but the disease has continued to progress.
Her only hope is an innovative form of immunotherapy treatment known as CAR T-cell therapy.
It involves taking the patient's own immune cells and modifying them so when put back in the patient's body they can destroy the cancer cells.
The treatment is potentially curative but it's extremely expensive — costing upwards of $600,000 — and Medibank says the fine print on Ms Sajjad's policy means it isn't covered.
Ms Sajjad and her husband Hossein Majlesi may have to sell their family home in Melbourne to afford it.
"The medical team has clearly expressed that any delay in initiating CAR-T treatment poses a very serious risk to Zohreh's health and survival," he said.
"Zohreh's health and life are at stake, and urgent intervention is critical."
Hossein Majlesi says he may have to sell the family home to afford CAR T-cell treatment for Ms Sajjad. (Supplied: Hossein Majlesi)
CAR T-cell treatment works by encouraging the immune system to attack cancerous cells.
T-cells — a type of white blood cell — are taken from a patient's blood then genetically engineered in a lab to produce molecules called chimeric antigen receptors (CAR).
These receptors allow the cells to target cancer cells but ignore others.
Mr Majlesi said his family felt duped by Medibank, with the health insurer hiding behind technicalities to avoid paying for the CAR T-cell treatment.
"We're being forced to liquidate assets to save my wife's life," he said.
In correspondence from Medibank, Ms Sajjad and Mr Majlesi were told CAR T-cell therapy was "a highly specialised treatment currently available to Medicare eligible recipients".
Ms Sajjad is not able to access Medicare as she is not yet an Australian permanent resident.
"When we enrolled with Medibank, they were fully aware that we were not permanent residents and explicitly included this in our policy," Mr Majlesi told the ABC.
"The policy clearly states that all cancer treatments, including immunotherapy, radiotherapy, and chemotherapy, are covered.
"Meanwhile, we face selling our home to afford CAR-T therapy."
A Medibank spokeswoman told the ABC they had been "been in regular contact about the treatment options available".
"We'll continue to support the customer with eligible treatments available through their health cover," she said.
"We wish her the very best with her ongoing treatment."
Technicalities preventing access to treatment
Because Ms Sajjad and Mr Majlesi are not able to access Medicare benefits due to their residency status, they have had to take out a private health insurance policy that essentially covers them in the same way Medicare would for Australian residents and citizens.Ms Sajjad's insurance policy says it covers "Chemotherapy, radiotherapy and immunotherapy for cancer" but only medical services "where a Medicare benefit is payable" and drugs when they're listed on the federal pharmaceutical benefits scheme (PBS).
However, CAR T-cell treatment is funded jointly by the state and federal governments through the National Health Reform Agreement, after approval from the Medical Services Advisory Committee, rather than Medicare.
If it was funded through Medicare and the PBS, it would have an "item number".
Medibank also initially refused to pay for Ms Sajjad's radiotherapy, an immunotherapy drug pembrolizumab, and another medication epcoritamab, which was designed for people with Ms Sajjad's condition and listed on the PBS in May.
After weeks of back-and-forth trying to get Medibank to cover his wife's treatment, Mr Majlesi escalated the case to the Ombudsman.
He said after that Medibank finally provided a written response.
In it, they offered to pay for the pembrolizumab and epcoritamab medication, but still refused to cover the CAR T-cell therapy.
The Medibank spokeswoman told the ABC they had supported Ms Sajjad with about $60,000 worth of treatment over a year.
Mr Majlesi said he had gone public with their story to warn others.
"Other families could face similar hardships," Mr Majlesi said.
"They refuse CAR T-cell therapy, a newer and more effective treatment, simply because it lacks an item number."
Treatment available abroad
A medical source told the ABC they often advised patients who were unable to access Medicare to head abroad to places like India for medical procedures."The treatment is significantly cheaper than in Australia," they said.
Mr Majlesi said he had looked into the cheaper treatment available overseas but was concerned that the medication and procedures would be inferior.
"The results of these local treatments are not publicly available, and they are essentially conducting trial and error with patients," he said.
In any case, he said there was not enough time.
"Given that Zohreh's cancer is a very aggressive and highly malignant stage 4 this is a risk we cannot take," Mr Majlesi said.
"We simply cannot put her life at risk for the sake of a cheaper treatment."
Melbourne's Peter MacCallum Cancer Centre is one of the places where CAR T-cell therapy is available. (774 ABC Melbourne: Clare Rawlinson)
'Not practical' to list exclusions
In a reply to Mr Majlesi asking why Medibank would not pay for CAR T-cell therapy, Medibank replied that it did not advise about which specific treatments were not covered."You also mentioned that there was no specific reference to CAR T therapy being excluded from your policy at the time of purchase," Medibank wrote in a letter dated August 12.
"It is not practical to list every clinical treatment that is excluded. Instead, we provide clear information on what is covered."
Mr Majlesi doesn't agree.
He said given that CAR T-cell therapy was expensive and advanced, it should have been stated clearly that it was not part of the medical insurance policy he was able to take out as a business visa holder.
"If they did not cover CAR T-cell therapy, they should have explicitly mentioned it," he said.
"Each time we have asked, they have avoided giving a clear response and instead made the matter more complicated."
Mr Majlesi said the policy was murky and misleading, and gave insurance providers too much leeway.
"I am not a legal expert who can analyse the intricate details and legal clauses of an insurance policy," he said.
"What is the purpose of insurance if not for such unpredictable and difficult times?
"If an insurance company can find a way to escape its responsibilities whenever the costs are high, the whole system collapses."
The Medibank spokeswoman said its "policy documents are clear as to what is covered under each policy — and this particular customer's policy document clearly states that non-PBS items are not covered".
"Unfortunately, there are many medicines and treatments that are not covered by the PBS, including CAR T-cell therapy, and therefore not covered under health insurance," she told the ABC.
"Because there is no MBS item number for CAR-T cell therapy, and it is not a benefit universally available through Medicare, health insurers cannot pay benefits for this treatment under private health cover."
Written by Toby Mann, ABC News.
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