Mumbai: Prices of exorbitantly-priced
life-saving medicines, used to treat rare diseases have increased by 12%, with
implementation of Goods and Services Tax, resulting in skyrocketing bills and
leaving many patients in the lurch. These high-value ‘orphan drugs’ used in
bone marrow transplant, classical Hodgkin Lymphoma, Crohn’s disease and
melanoma, prescribed usually lifelong with certain treatment running into
crores, have now been burdened with the 12% additional levy, which was nil
before July.
While no specific details are available, the market size is
estimated between Rs 50-60 crore, with 100-odd life-saving drugs imported to
treat rare diseases mainly genetic disorders, that affect a small percentage of
population.
According to Rare Diseases and Disorders – Research,
Resource & Repository of South Asia, 2011, there are over seven crore
patients suffering from these diseases in India.
As against this, GST impact on drugs sold in the country has
largely been neutral, with no significant increase in prices as domestic
companies absorbed the increased tax liability of around 2.29%.
According to guidelines, patients can import these
lifesaving medicines (for personal use) which are not approved in India, by
applying for an import permit and custom duty exemption. In addition to the 12%
levy, patients need to cough up the freight cost of 200 euros for normal, and
650 euros for cold chain shipment of the drugs being imported.
Often debilitating lifelong disease or disorder condition
with a prevalence of 1 or less, per 1000 population is defined by the World
Health Organization (WHO) as a rare disease. Considering the sheer number of
identified rare and ultra rare diseases and their varying prevalence, it
becomes nearly impossible to ascertain the total number of rare (and ultra
rare) disease patients in the world, experts pointed out.
“In most of the cases, the import quantity is not available,
but the burden of additional 12% is high, when the patient has to take the
medicine lifelong,” says Praveen Sikri of Ikris Pharma Network, a firm which
connects patients with overseas suppliers.
In certain cases, life-saving drugs like Normosang,
Cidofovir and Defibrotide which are required to be dispensed immediately to
patients, are not available and take a minimum of four to five days to import,
causing delays in treatment.
“The import of drugs for personal use is subject to
exemption from basic customs duty like earlier if customs duty exemption
certificate and import permit is obtained. However, the IGST (Integrated Goods
and Services Tax) payable thereon has to be paid, as the same is not exempted
in respect of drugs for personal use,” official sources said.
Source: THE TIMES OF INDIA-24th November,2017
