RARE DISEASE POLICY - SCIENCE AND TECHNOLOGY
News: NCP
MP raises concern over rare diseases, says no patient has benefited from new
policy
What's in the news?
● Rajya
Sabha MP from the Nationalist Congress Party Fauzia Khan on December 12 raised
concerns over the benefits of the National Policy of Rare Diseases (NPRD) not
reaching any patient with rare diseases even after several months since its
introduction.
● The
Union Ministry of Health and Family Welfare notified the NPRD in March 2021. In
May, it increased the funding support to ₹50 lakh per patient with diseases
classified as rare for their treatment.
What is Rare Disease?
● WHO
defines a rare disease as a lifelong disease or disorder that often highly
weakens an individual. It has a
prevalence of 1 or less per 1000 population.
● However,
every country has its own definition for rare diseases.
● The
US defines rare diseases as a disease or condition that affects fewer than
200,000 patients in the country.
National Policy For Rare Diseases, 2021:
Categorization:
The policy categorizes rare diseases into three groups as follows.
● Group 1:
Disorders amenable to one-time curative
treatment.
● Group 2:
Diseases requiring long term or lifelong
treatment.
● Group 3:
Diseases for which definitive treatment is available, but challenges are to
make an optimal patient selection for benefit.
● The
Government has identified eight Centers
of Excellence for the treatment of rare diseases.
● National
Policy for Rare Diseases, 2021 provides for the National Consortium for Research and Development on therapeutics for
Rare Diseases with an expanded mandate to include research &
development, technology transfer and indigenization of therapeutics for rare
diseases.
Government Support:
● The
Government will provide financial support of up to Rs. 20 lakhs under the umbrella scheme of Rashtriya Arogya Nidhi
for treatment of those rare diseases listed under group 1.
● Moreover,
beneficiaries for such financial assistance would not be limited to BPL
families. About 40% of the population, eligible under Pradhan Mantri Jan Arogya
Yojana, will also be eligible for assistance.
● Further,
for group 2, the state governments can
consider supporting specific patients. It includes a rare disease that can
be managed with special diets or hormonal supplements or other relatively
low-cost interventions (Diseases listed under group 2).
● Voluntary Crowdfunding:
The government has said that it will assist in voluntary crowd-funding for the
treatment of group 3. It is because
it will be difficult to fully finance the treatment of high-cost rare diseases
of group 3.
Criticisms:
● Though
the document specifies increasing the government support for treating patients
with a rare disease from ₹15 lakh to ₹20 lakh - caregivers say this doesn’t reflect the actual costs of
treatment.
● It
is argued that the new policy offers no support to patients awaiting treatment
since the earlier National Policy for Treatment of Rare Diseases 2017 was kept
in abeyance.
● Concerns
have been raised about the new policy not considering group 3 patients, who
require lifelong treatment support.
● It
has been demanded that at least two centers in every state need to be
identified as a center of excellence to help the patients avoid the time and
cost of moving out.
Go back to basics:
Rashtriya Arogya Nidhi scheme:
● It
provides financial assistance to patients
living below the poverty line and who are suffering from major
life-threatening diseases, to receive medical treatment.