Important Points to Include

  • 15,000 patients in Ireland have Inflammatory Bowel Disease (herein referred to as IBD).
  • IBD includes both Crohn’s Disease and Ulcerative Colitis, and are chronic autoimmune illness, which have no known cause or cure.
  • The peak age of onset is between 15 and 40 years of age, but anyone at any age can be diagnosed.
  • Symptoms which patients can experience include: abdominal pain and cramps (severe at times), diarrhea and blood, exhaustion, loss of appetite, nausea, fever, weight loss, associated joint pains and arthritis, eye problems, nutritional deficiencies including B12 and iron deficiencies.
  • Drugs Payment Scheme costs a patient with IBD a maximum of €120 per month which can culminate to €1,440 annually.
  • DPS Scheme used to have a maximum payment of €90, it is now €120 per month. This equates to an annual drugs payment increase of €360. What justifies this increase in recessionary times?
  • The drugs prescribed for IBD include drugs for ‘flare ups’ and ‘maintenance’ medications. So in the case of a ‘flare up’ the amount of drugs prescribed to an IBD patient can increase. Thus it is highly likely that IBD patients will be paying €120 per month for their medications.
  • Due to modernization of medication, there is now ‘high technology’ drugs prescribed for Crohn’s Disease. These biologic drugs are expensive and a patient on this type of a drug will pay €120 a month under the current DPS Scheme. It is also worth noting that the prescribing guidelines for such drugs are for moderate to severe Crohn’s Disease, unresponsive or intolerant to other first line medications. Thus a patient on this class of drug will have a disease level which has a significant impact on their quality of life prior to their Consultant prescribing the drug.
  • Many patients need a combination of medications, so when the cost of them is added together €120 per month will be spent under the DPS Scheme.
  • GP visits can cost €55, depending on your locality. There are often extras for routine blood tests, which are a necessity for IBD patients. Consultant visits can vary in cost, e.g. €80, €100, €150+. When all these expenses are added together the can amount significantly. (It is important to note that the long term illness scheme will not cover the costs of GP visits or Blood tests)
  • IBD is an autoimmune illness like Multiple Sclerosis, yet IBD is excluded from the Long Term Illness Scheme and MS is not. IBD and MS can both follow patterns of ‘remission’ and ‘flare ups’. Both have differing degrees of severity in individual patients ranging from mild, moderate, to severe disease. Also note that in America Tysabri, a biologic drug is prescribed for both conditions.
  • By including IBD in the Long Term Illness Scheme, it will help keep patients well and prevent the costly complications that rob people of a quality of life, resulting in hospital admissions at a cost to themselves and the state.
  • Ask whom you are writing to look at ‘The Voice of Inflammatory Bowel Disease’ at http://www.iscc.ie/files/patient_manifesto.pdf. It is a Manifesto for young people with Inflammatory Bowel Disease, outlining key issues. {Anyone who participated in the Manifesto, could mention this, if you want to} The manifesto emphasizes the desire among patients for IBD to be designated as a long-term illness. This is because Crohn’s disease and ulcerative colitis are life-long conditions, which have a significant financial burden on patients. You could take a quote from the manifesto, which reflects your own view and put it in the letter.
  • One in five Irish people living with Crohn’s disease is coping poorly or very poorly, according to the findings of a new research study conducted by the website http://www.crohnscolitis.ie. Also, take ask them to look at this article printed in the Irish Times regarding IBD sufferers' quality of life http://www.irishtimes.com/newspaper/health/2010/0615/1224272509875.html.
  • It has been well publicized in the last 15 years that chronic illnesses such as Crohn's Disease, Ulcerative colitis, coronary heart disease and Alzheimer’s have significantly increased yet the LTI scheme has not been updated to reflect these trends.
 If you are strapped for time, send an email to [email protected] and we can send you out drafts letters which you just have to sign and post.




Guide to Letter Writing

 What the Letter should have included: 

    • Identify yourself as a patient with IBD, or family member, friend etc.
    • Describe the issue in plain language i.e. why you are writing to them.
    • Give a background/context to the issue e.g. explain what IBD is and the costs of medication.
    • Be clear about what you want the recipient to do about the issue, as in what action you want them to take– i.e. in our case we want the Health Act amended to include IBD as a long term illness.
    • Ask what steps the recipient is going to take to deal with your issue. If writing to your local T.D. or oppostion party members ask them to raise a parliamentary question on the issue in the Dail.
    • Your purpose for writing should be stated in the first paragraph of the letter. If the letter pertains to a specific piece of legislation, identify it accordingly. In our case we are referring to the 1970 Health Act & wish to seek the amendment of Section 59 of the Act to include IBD as a long-term illness.
    • Be courteous and to the point. Include key information, and use examples to support your position (see info sheet on ideas to include in letter). Also local stories and personal messages are very persuasive!
    • Thank who you are writing to for taking the time to read your letter.
 

  • A personal letter is best
    • It will have more impact to tell your own experiences. It will also help politicians etc to see people with IBD as individuals whose lives are impacted in unique ways – yet we have similar needs, which bring us all together.
    • If you feel writing is not your forte – don’t worry – these types of letters are not being judged in terms of how they are wrote – it is more important that you get the opportunity to tell how you fell – you don’t have to have fancy works and exceptional grammar for that – the letter writing campaign is not about that.
    • If you don’t feel comfortable with writing an individual letter – you can take our templates and sign them  - we encourage you if at all possible to please put in something regarding how you feel on the issue – even just a line or two will make all the difference - just to put in the personal impact.
 

 

  • Ask for a reply
    • This is in order to hold politicians accountable for their actions to the public, to the people whose best interests they are supposed to have at heart.
 

  • If you get a reply please hold on to it
    • It may be important to refer to at a later date.
 

  • Keep Copies
    • Keep copies of what you write so you can reply or respond if needed.
 

  • Respond
    • If you get a reply and feel that the issue is not dealt with respond back with another letter and ask for further explanation

  • Who do I write to?
    • See sheet on contacts for further information.
 

  • Language!
    • Take care with your language, no swearing etc. Be respectful.
 

  • Postal letter is best
    • A letter received by Government officials in the post will have more impact than email, so please print out your letter and post it, if at all possible. If you can’t post it for whatever reason please do still send an email.
 

  • Let us know if you have sent a letter/email, and let us know who you sent them too
    • This is to keep a track of the numbers of letters that should be received by individuals targeted – these numbers may need to be quoted in the future.
 

  • The Manifesto
    •  Urge whomever you are writing to look at ‘The Voice of Inflammatory Bowel Disease’ at http://www.iscc.ie/files/patient_manifesto.pdf. Explain how the Manifesto for young people with Inflammatory Bowel Disease, outlines key issues (note issues are relevant to most IBD patients regardless of their age).
 

 

  • Remember! – Writing your letter is a really important way to get your point across to officials – not everybody takes the time to write letters, so there is a strong possibility that YOUR LETTER may result in a very important decision!
 

  • Lastly – Thanks for taking the time to write your letter! And be sure to spread the word!