Acetylcysteine - Part 3 and still no answer

Unfortunately I've had this ongoing saga dragging out for more than a year now, where I've been waiting for a replacement nebuliser medication named Acetylcysteine to be added to the PBS.

Introduction
Part One
Part Two

Prior to March 2011, the PBAC were responsible for approving medicines under $10 Million per annum. For products over $10 Million the PBAC referred to the Federal Cabinet for approval. 

From March 2011, Nicola Roxon decided to change the rules and make the Federal Cabinet responsible for the review and approval of all PBAC recommendations, further delaying the approval of Acetylcysteine.


I wrote to Ms Roxon (Federal Health Minister) and Mr Peter Dutton (Oppsition Health Minister) in early March 2011. As yet, I have had zero response.


My sister also wrote to Ms Roxon, but apparently she may have used much stronger language than me, as today, she actually finally received a response (after six weeks).

So this letter doesn't tell me anything that I don't already know, and doesn't direct me to do anything that I haven't already done.

At this stage I'm still wasting an entire day every four weeks driving an 80 kilometre round trip to a major city public hospital to wait at a specialist clinic in order to get an approved hospital prescription to take to the hospital pharmacy where I sit and wait for another hour for it to be filled....

Some days I really feel like tearing my hair out.... it's no wonder I'm going grey!

Acetylcysteine - Part Two - How Government red tape ruins everything

Just when I thought everything was sorted, Government red tape has ruined it:

Following my correspondence to you last week regarding the 1st May 2011 PBS listing of Omegapharm Acetylcysteine Solution. 

I received notification on Friday from the Pharmaceutical Benefits Advisory Committee (PBAC) that our submission will now require Federal Government 'Cabinet' approval. This decision was made without any consultation or warning from the Minister for Health and Ageing, Nicola Roxon and has come as a great surprise to both myself and the PBAC.

Prior to last week, the PBAC were responsible for approving medicines under $10 Million per annum. For products over $10 Million the PBAC refers to the Federal Cabinet for approval. The Federal Cabinet will now be responsible for the review and approval of all PBAC recommendations.

Even though Omegapharm Acetylcysteine is well below the $10 Million level (and the product was recommended for listing in April 2010 by the PBAC and was accepted for a May 1st 2011 listing last week) the product will require Federal Government 'Cabinet' approval. 

The decision by the Federal Government will affect the May 2011 listing of Acetylcysteine. The Federal Government confirmed that it will 'put the needs of patients with serious conditions and limited treatment options first', so hopefully they uphold this statement and finalise the PBS listing of Acetylcysteine quickly.

So what does this all mean right now. We urgently need you help!

As part of the new 'Cabinet' review process, I have been asked by the Lung Foundation, Thoracic Society and the PBAC to seek feedback from Prescribers/ Specialists on the effectiveness of Acetylcysteine in patients that have the following lung conditions:

·         chronic bronchopulmonary disease (chronic emphysema, emphysema with bronchitis, chronic asthmatic bronchitis, tuberculosis, bronchiectasis and primary amyloidosis of the lung);

·         acute bronchopulmonary disease (pneumonia, bronchitis, tracheobronchitis);

·         pulmonary complications of cystic fibrosis;

·         pulmonary complications associated with surgery;

·         post-traumatic chest conditions;

·         atelectasis due to mucus obstruction.

·         lung cancer;

·         tracheostomy care;

·         anaesthesia.

Therefore, we URGENTLY require the following information;

Name of your Specialist

Location of your Specialist

Telephone Number of your Specialist

The Lung Foundation and the Thoracic Society require this information with the next 48 hours and will be writing to the Federal Government and PBAC.

If you feel uncomfortable providing us with this information, please send the details through to the CEO of the Lung Foundation Mr William Darbishire @ Williamd@lungfoundation.com.au

To date our company has done everything it can to provide affordable access to this important medicine. While the delay with the TGA and now the Federal Government is well beyond our control, our company is committed to ensuring Acetylcysteine Solution receives the PBS listing.


I think I might need to head down to Julia's office with a letter of complaint on Wednesday.

To cut a long story short

Have you ever thought about what would happen if you needed a certain type of medication and it just wasn't available anymore? Unfortunately, this is the scenario that I've been dealing with lately. The one and only supplier decided to stop manufacturing without any warning, leaving patients like me with absolutely no equivalent alternative.


I've been without it for a couple of months now, which has led to a further decline in my lung function. After some online research, I finally managed to find some details on a new Australian manufacturer just this week (which my pharmacist and doctors didn't even know about). The drug has not yet been added to the PBS, but I was able to order it in. From the information that I found, it is scheduled to be listed from July 1st 2010.

The good news is that I'm looking forward to being back on track again after my slight hiccup..... and I can finally start to breathe again.

My advice to everyone is to always do your own research. Doctors will never be able to know everything about the latest and the greatest treatments, or the manufacturing plans of the various drug companies, and your health is far too important to just leave it to someone else to manage.

I'm adding some keywords to the bottom of this post just in case someone out there is googling looking for help just as I was Monday night, when I stumbled across just what I needed..... thankyou to the WWW.

Mucomyst alternative
Acetylcysteine Solution
Omegapharm
Mucolytic Agent
Bronchiectasis