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Important to highlight challenges facing myeloma patients
• THANKS to Richard Osley for the article (Patient wins battle for wonder drug, November 6) which was most sensitively written and helped to highlight most appropriately some aspects of this complex and challenging disease.
The article also helped to highlight the challenges some patients can face when accessing vital treatments.
In our own case, my partner’s previous GP misdiagnosed the condition for over six months despite him being heavily symptomatic of the disease and, while initially I was very upset, I slowly became to realise that this might not have happened if there had been sufficient awareness about the disease, not only among members of the general public, but also a large number of health professionals.
Treatments can be very effective, but it helps to have an early diagnosis, before too much damage has occurred. Saying this, the vast majority of patients who present with symptoms such as bone pain, lethargy and frequent infections will not be diagnosed with myeloma.
It is difficult to over-emphasise the impact a diagnosis of multiple myeloma can bring. Treatment options are not always straightforward as the effects of the illness can be different for each patient.
In Britain 4,000 new cases are diagnosed each year. As a relatively rare form of cancer, newer and more progressive treatments can be expensive and difficult for patients and their doctors to access and this can be heartbreaking, especially when their clinical effectiveness may be undisputed.
A number of new
anti-myeloma drugs, which act differently to traditional chemotherapies, can make a huge difference to patients’ lives. My partner is testament to this, but they need to be made available to every patient at the point of clinical need.
Unfortunately, some patients in need of vital treatment can find themselves in a position whereby it needs to be demonstrated that they are clinically worthy of receiving a particular treatment, that they are an exceptional case; but the guidelines for exceptionality can vary from PCT to PCT.
Some of the time the effects of the disease can be beyond the control of the people it affects, including those that are close to them. But we can very much control our efforts to raise awareness of the disease, so that ultimately we can move closer to discovering (and hopefully removing the barriers to access!) yet more new treatments and eventually a cure for this little-known disease.
Petra Dando, NW5 |
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