Expensive cancer care products pile agony on desperate patients

Every time Peter Gathakwa, a colon cancer survivor, answers the call of nature, he plainly throws away about Sh100.

The 50-year-old man who uses colostomy bags— waste bags that collect stool from a small hole on his abdomen— knows too well the economic burden patients who use rehabilitation products in Kenya go through.

After surgery, his challenge was getting affordable, quality stoma bags. Before he joined a survivors’ group that receives donations from Europe, he would wash the disposable bags, hang them on his grass-thatched roof to dry and reuse.

‘‘I knew it could give me infections, but I had no option. I had to choose between buying the stoma bags or food,’’ he said.

Stoma bags are mostly imported and sold in select pharmacies and cost as much as Sh1,400 and Sh100 per bag for reusable and disposable ones respectively. The reusable bags are disposed after using them twice or thrice. In addition, users have to buy a base that ranges from Sh700 which is attached to the pouch and used up to four times or less if it soils.

In a country where a majority live below a dollar day, few can afford to throw Sh100 in the pit latrine every time they answer a call of nature. Most poor patients have had to settle for improvised jar lids, cloths or polythene bags as stool or urine bags.

Lawrence Gichini, an oncology nurse at the Aga Khan University Hospital said colorectal (colon and rectal) cancer is one of the most expensive diseases to live with in Kenya and survivors who end up wearing stoma bags face a lot of stigma as the constant dribbling leads to social outcasting.

‘‘One young man wanted to commit suicide because he didn’t know where to turn to after surgery,’’ he said.

Every day colorectal cancer patients who have used most of their savings in their treatment are discharged from hospitals and head home depressed, to start using the improvised bags.

For the few who still have the purchasing power, locating a pharmacy that stocks stoma bags is still another hurdle they face.

David Makumi, chair of the Kenya Network of Cancer Associations said importers bring in the stoma bags and sell them to pharmacies that fix the prices at will, pushing up the cost of these vital products beyond the reach of many Kenyans.

Urine bags, adult diapers, artificial breasts, colostomy or ileostomy bags are not listed as goods exempt from tax or zero rated in the First and Second Schedules of the VAT Act 2013.The products attract 16 per cent value added tax and customs duty.

‘‘I import breast prostheses and after paying customs duty, the cheapest goes for Sh5,500. The ones for Caucasians are cheaper compared to those for dark-skinned users which can cost over Sh20,000,’’ said Eunice Muriuki, a breast cancer survivor who sells prosthesis.

On top of the artificial breasts, survivors require special post-mastectomy brassieres with the cheapest costing Sh3,500. Ms Muriuki said sometimes patients find it hard to pay upfront and instead settle the payment in three installments.

‘‘But I have to get a letter from their employer, just in case they default I can follow up,’’ she said.

Mr Makumi is of the view that the Kenya Medical Supplies Agency (Kemsa) should explore stocking these palliative care products to enable increased access and lower commercial prices.

Mr Gichini, who is also a stoma care therapist said often when someone buys a stoma bag for Sh1,400, he tries his best to maintain it, thus extending its use.

But in the process the skin surrounding the abdominal opening is eaten up because of the prolonged use, causing other infections, meaning additional costs for treatment are incurred.

European hospitals have been donating surplus colostomy bags to Stoma World Kenya, but still patients have to pay the 1.5 per cent railway development tax levied on imports to clear the donations from customs.

They also have to pay for transport every month they come to Nairobi to collect their supplies.

Patients suffering from Crohn’s disease, severe irritable bowel syndrome, bladder disorders, breast cancer survivors and those who use adult diapers also face the same financial burden.

The shortage of pharmacies that stock these products has made worsen the burden as consumers have to travel to Nairobi to make purchases.

‘‘I spend about Sh35,000 per month on adult diapers for my mother who is suffering from multiple sclerosis. I also pay Sh8,000 to a nursing aide and Sh7,000 for a helper,’’ said John Wachira, adding that the government should lower costs of the palliative products.

Kenya has no statistics on the number of users of rehabilitation products. Stoma World Kenya is seeking to bring together all users of stoma bags to petition the government to lower the cost of these products.

Waive taxes

According to the latest Nairobi Cancer Registry report, colorectal is the third most common type of cancer in men after prostate and oesophagus, but carries the greatest stigma after survival. Every year, 968 men are diagnosed with it in Kenya and 684 die from the disease.

About 816 women are diagnosed with colorectal cancer every year.

Health secretary Cleopa Mailu said the ministry will look into lowering the cost burden of patients suffering from non-communicable diseases.

The Health ministry is planning to hold talks with the Treasury and the Kenya Revenue Authority to waiver taxes on the long-term products used by patients.

“We shall consider waiving taxes on long-term commodities such as colostomy bags, prosthesis and others in the coming 2016/2017 budget to reduce the burden on poor Kenyans,’’ Mr Mailu said.

“Budgetary processes are long but we are soon engaging various stakeholders, including hospital representatives, on devising a mechanism to ensure that patients suffering from various forms of non-communicable diseases are reached on cost,” said Mr Mailu.

In developed countries, patients receive free stoma bags or tax relief and pay less for water. They also do not pay prescription fees and have keys to special public toilets and special cards which are shown at airports and security checks.

Security officials are also trained on how colostomy bags look to save patients embarrassment at check points.

However, Prof Othieno Abinya, an oncologist consultant said Kenyan hospitals lack the economic muscle to give free colostomy bags, adding that it takes an organised, well informed people and a robust economy to reduce cancer rates and deaths significantly.

Kenya’s best bet lies in taming the rising cancer cases by creating awareness and promoting early screening programmes.

‘‘Typically, every five years after 40 years, one should go for colonoscopy. But the challenge in Kenya is the cost which ranges from Sh25,000 to Sh50,000, availability of specialised equipment and personnel,’’ said Mr Makumi.

For those with a history of cancer in their family, screening should be done 10 years earlier than the age of diagnosis of the relative.