Fighting on . . . Rhoma Kelly wants politicians to sit up and take notice of the plight of those living with Crohn?s Disease.
Fighting on . . . Rhoma Kelly wants politicians to sit up and take notice of the plight of those living with Crohn?s Disease.

Pain fight taken to Federal Govt

By CRAIG McTEAR

FINALLY, Rhoma Kelly has found some relief from a dreaded bowel disease which has plagued her for two years.

But relief has come at a hefty price for this Boambee grandmother.

She'll have to pay $5275 every eight weeks for the miracle drug used to treat her Crohn's Disease so she can lead a relatively normal life.

Rhoma, 52, is lobbying the Federal Government to put Remicade/Infliximab on the Pharmaceutical Benefits Scheme for those living with Crohn's and other inflammatory bowel diseases.

jThis drug is already given free to rheumatoid arthritis sufferers.

"It is ridiculous that our government will gladly pay for extensive surgery to treat Crohn's, but not for the drug which works in 82 per cent of cases," she said.

Rhoma and her husband, Mark, have spent more than $21,000 on medical treatments and procedures since her diagnosis in August, 2004.

They now fear they'll have to cash in on their super and be forced to live off the pension in their retirement.

"We may even have to sell our home to fund what I believe should be funded by the government," she said.

Rhoma has kept working throughout her illness, which she admits has been a battle.

"I'd walk around with a heat pack and I'd lie on the floor in the office. If it was under control, I'd stay, but if it wasn't, I'd go home.

"It's the most terrible thing. It's like having gastro 24/7. The pain is debilitating.

"When I'm sick, it make you very introverted. It's hard to deal with pain and still be nice to people. It's also very isolating.

"But now I'm back to being me, giving cheek. Life is worth living.

"Mark has been my absolute rock. He has been just magnificent."

Rhoma has so far amassed 430 signatures on a petition which will soon be presented to Federal Parliament.

If you'd like to lend your support to her fight, you can contact her at PO Box 1963, Coffs Harbour, 2450. Alternatively, visit www.infliximab.org.



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