Cost of Treatment

 

 

Day-to-day care

The average monthly cost of treating the disease varies from PLN 1,000 to PLN 4,000 (between USD 270 – 1,100). This includes the cost of prescription drugs, special nutrients, pancreatic enzymes, water-soluble vitamins, antibiotics, a variety of other drugs and supplements, the costs of medical appointments and travel costs, and last, but not least, a reduction in the parents’ earning power as they have to cut back on their professional activity to look after their child.

Adam's meds cabinet:

 

Going private

We now have a new CF clinic in Dziekanów Leśny near Warsaw, which will be our primary care center until Adam turns 18. Should Adam need intravenous antibacterial treatments or have serious pulmonary exacerbations, we will be sure to stay in clean and safe conditions.

Public hospitals in Poland (whether other CF centers or general hospitals) are infamous for exposing patients to the risk of cross-infections; due to the appallingly low level of funding for state healthcare institutions, patient rooms are overcrowded with several CF patients being treated in the same room at the same time, a situation that would likely not be encountered in Western European countries or in the US.

Infections contracted in hospitals rob Polish CF patients of several years of their life, and account for the difference in average life expectancy in Western Europe & North America (35-40 years) and Poland (approximately 25 years).

Pictured: a shower in a Polish hospital in Poznań captured by the mother of a CF child patient:

Given the above, should Adam need other procedures (like tonsilectomy, or any other hospital treatment) we will use our best efforts to have him treated and hospitalized in Warsaw’s only full-scale private healthcare institution – the newly-built Medicover hospital. The hospitalization cost, excluding certain drugs or procedures, is PLN 990 (USD 280) per day. However, we view this as an investment that will save our son several additional weeks of hospital stays resulting from cross-infections in overcrowded patient rooms, thus increasing his life expectancy

  

Physiotherapy

1.  A PARI air compressor (every two years, PLN 1,250 (USD 340)) and nebulizer (at least every six months, PLN 150 (USD 40)). Other nebulizer devices: PARI eFlow (PLN 3,100 (USD 840)), Aeroneb Go (PLN 1,000 (USD 270)).

2. An airway clearance vest (THE VEST) can supplement, replace or be alternated with chest-clapping. THE VEST, designed to help mobilize pulmonary secretions through high-frequency chest wall oscillation, costs almost PLN 32,000 (USD 9,000).

3. Pediatric pulmonary physiotherapy. The sessions need to be performed by a certified therapist at home to minimize the risk of little Adam catching an infection in an outside facility which serves many children. The cost of this physiotherapy is PLN 800 (USD 200) per month.  

 

Antibiotics

Many antibiotics that are fully reimbursed in Western Europe are not reimbursed at all in Poland. A six-month course of Tobramycin (which is particularly useful in fighting pseudomonas aeruginosa infections) or Cayston would set us back approximately EUR 12,000 

 

Transplants

Most CF patients in their teens or 20s need life-saving liver and lung transplants. The cost of a lung transplant abroad is approximately EUR 150,000.

With demand for lung transplants among CF patients in Poland at approximately 20 per year, for financial reasons, so far only a couple of dozen Polish CF patients have undergone lung transplants domestically following the first-ever transplant for an adult CF patient in Poland in 2011. Pediatric lung transplants are NOT available in Poland. Polish patients therefore need to raise financing individually to pay for these prohibitively expensive operations abroad (the most common destination being the Vienna AKH hospital).

 

Gene therapies – the future of CF treatment

Gene therapies offer the only real hope of a complete recovery for CF patients. The “ifs” and “whens” aside, the cost of this therapy is likely to be extremely high. For example, Glybera, the first gene therapy product approved in the Western world, which is used to treat the cause of an extremely rare genetic disease (LPLD), costs around EUR 1.2 million per patient.

 

Other therapies

The drug Orkambi, which has been approved for patients with the double f508del mutation (which accounts for almost half of cystic fibrosis cases), has been shown in trials to markedly improve lung function in patients as well as help them to gain weight; however, it costs approximately USD 250,000 for a year’s supply. It is reimbursed or partially subsidized in the US and in some European countries. It is without a doubt beyond the reach of poorer countries like Poland.