Home » Your Health » Children's Health News » Mother Campaigns For NHS Coverage For Rare Cystic Fibrosis

Mother Campaigns For NHS Coverage For Rare Cystic Fibrosis


The mother of a 15-month old girl with a rare mutation of cystic fibrosis is lobbying the NHS to cover a costly but effective new medical treatment.

Jess Nickless, from Devon, has asked the government to make Kalydeco available as a treatment for patients with the rare G551D mutation of cystic fibrosis, a serious genetic disorder that causes damage to the lungs and the digestive system.

Approved by the European Medicines Agency, Kalydeco is available in the US and Italy. Its listed cost is £182,000 per patient per year.

But while the European Medicines Agency advises that Kalydeco only be prescribed to patients over the age of six, Ms. Nickless, whose daughter Ellie has G551D cystic fibrosis, wants it to be available to patients of all ages.  Citing the fact that her daughter has already sustained lung damage due to the disease, Nickless believes that waiting until her daughter is six for treatment with the drug will put her at greater risk.

For her campaign, Nickless has launched an e-petition that currently has more than 11,000 signatures.

Her efforts are being supported by another mother of a child with the G551D mutation, Denise Murphy, who calls it a “travesty” that the UK is behind the US, Germany and Italy in terms of the availability of Kalydeco.

According to the DoH, decisions on funding for Kalydeco are up to local NHS chapters.

Source: BBC

ADVERTISEMENT

We Recommend

More on ActiveBeat
  • The Top Causes and Risk Factors of Lung Cancer
    There are few diseases more frightening than lung cancer, which tends to strike individuals exposed to dangerous air pollutants and which can eventually lead to a situation where...
    Children's Health News
  • Most Common Causes of Low Blood Pressure
    The media and medical world place a lot of emphasis on high blood pressure, as it can lead to bigger problems like stroke or heart attacks.
    Children's Health News
  • The Most Common Symptoms of Gout
    Gout is a painful condition that is seeing a resurgence of sufferers. This uncomfortable affliction is a form of arthritis, often called gouty arthritis.
    Children's Health News
  • Types and Symptoms of Common Heart Problems
    The heart is obviously an essential organ, and it's quite resilient – consider the average heart beats about 3-billion times over the course of an 80-year lifespan.
    Children's Health News
  • Natural Ways to Relieve Arthritis Pain
    Rheumatoid arthritis involves chronic stiffness, swelling, and pain affecting the joints, and it can result in patients struggling to carry out their most simple daily activities,...
    Children's Health News
  • Early Warning Symptoms of Kidney Stones
    You wake up in the middle of the night feverish, your lower back hurts, and your abdomen is painfully swollen and tender.
    Children's Health News
  • Most Common Symptoms and Causes of Bipolar Disorder
    Bipolar disorder is a serious mental illness that is marked by periods of depression (feeling down) and mania (expressing high levels of energy and sometimes reckless...
    Children's Health News
  • Common Causes of Dry Mouth
    Do you suffer from a constant pasty, dry mouth? Most times, dry mouth is due to something simple, like dehydration or weather.
    Children's Health News
  • Sneaky Heart Trouble Warnings For Women
    It's often too late before you realize you have a heart issue. However, certain sneaky patterns often arise to warn patients that their might be an issue.
    Children's Health News
  • The Warning Signs of Cervical Cancer
    According to the American Cancer Society, there are an estimated 12,340 new cases of cervical cancer in America each year.
    Children's Health News
  • Possible Causes For Those Bumps on Your Skin
    As we age, we often feel that the days of bumpy skin embarrassments (i.e., teenage acne) are over.
    Children's Health News
  • The Warning Signs of Heart Attacks in Men
    What if you could tell when you're about to have a heart attack? It turns out there are signs in men that can warn you a cardiac episode is possibly on the way, so you can seek...
    Children's Health News
  • How to Soothe Panic Attacks and Severe Anxiety
    Out of the blue without warning, it’s that overwhelming sense of dread and fear…your heart pounds so loud that your ears ring and the sudden onset of panic leaves you...
    Children's Health News
  • Some Tips for Managing During a Heatwave
    Each summer it feels like the days get hotter and hotter. Where we once experienced heatwaves that lasted a few days or perhaps a week, North Americans now seem to feel the brunt...
    Children's Health News
  • Some Reasons Why Your Cough Won't Go Away
    So you've got a chronic cough, and you're not sure why. It could be something relatively harmless and easily fixable, or it could be a warning sign of something more...
    Children's Health News