Build India for better health care to patients with blood cancer and related disorders
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Let us build India, a supportive India &healthy India for our generation suffering from blood cancer and related disorders .
1. Youngsters who fought but lost
1.1 19 years old boy 1st year B-tech student from Palwal engineering college. Diagnosis: Aplastic Anemia. His hopes and aspirations met a tragic end. He succumbed to infections on 14th January 2012 while awaiting a donor for stem cell transplantation.
1.2. This was December 2010, my perfectly healthy strapping young son, who played basketball the evening before, is suddenly told that he has cancer. As things were slipping out of our hands while treating him in India, we decided to take Arjan to the USA for his further treatment and hopefully a bone marrow transplant thereafter. The treating facility in the US was able to find an HLA match for Arjan, but unfortunately the new treatment, was not able to put him in remission which is a necessity for a BMT, and we lost him in Oct 2012.
Simi Singh – Mother
1.3. On 30th October 2013,Dr Nalini Ambady, a Stanford professor of Indian origin succumbed to leukemia after a yearlong fight with the disease due to donor back out. Her disease was first detected in 2004, after which she was treated and the cancer went into remission. Hope came by repeatedly as She found as many as 13 matching donors. Although 13 donors were identified, 6 of them were found to be partially matched while the other 7 refused to donate.
1.4. Harleen kaur, my 7 year old girl child, suffering from Thalassaemia just died on 4TH Nov’2014 on the door step of recovery when the donor backed out and refused to give stem cells. Who is to be blamed for; the doctor, who did nothing proactively in precaution or the Indian registry ‘ Datri’ who failed to manage the donor despite of taking Rs. 0.825 millions or the system which provided freedom for donor to back out even after the his/her consent.
1.5 My son, Pranav Sharma diagnosed with Ewing's Sarcoma of femur bone in 2013 and undergone treatment at Rajiv Gandhi Cancer Institute, Delhi and again he was diagnosed with medicines inductive cancer AML on 7th Oct.2016 and had bone marrow transplant on 1st Jan.2017 ( Half transplant with Mother as donor) and crashed after 20 days, left us on 27 Feb. 2017.
Praveen Sharma – Father
1.6 Similar is the fate of our 18 year daughter Ishnoor who got admission in MBBS on 26th Aug’16 , the same day she was diagnosed suffering from AML (Acute Myloid Leukemia), & lost the war against deadly disease on 22th July’2017 while fighting for last 11 months in isolated ward of hospital.
Just a very brief count of painful journey in hospital:
a. She was admitted to PGI Chandigarh on 5th Sep ’16 for treatment & was given successive chemo’s for 3 months. On 30th Dec.16 Haplo (Half match bone marrow) transplant was done from me as donor as there was no one in family who had full match with her.
b. After 20 days of transplant her blood counts (TLC, Platelets, RBC's) got recovered, but suddenly after next 12 days started to fall down. Doctor’s inexperience & the huge lapse in handling post transplant care made her to suffer fungal infection, as she remained on 500+ sugar for more than 50 days, totally unchecked, which later resulted into graft failure.
c. She was on external support from 12th March’17 till last day & every alternate day RBC’S & platelets were transfused to stay her alive along with huge dose of antibiotics to control one or the other infections due to TLC count too low as 100-150 against requirement of 4000-11000.
d. After all efforts in vein, Doctors in PGI informed us on 10th May’17, that only option left out is to do re-transplant.
e. Global search for full match donor through Indian registry named ‘Datri’ located one donor from Israel registered with Ezir Mizion, on 07th May’17.
f. In parallel doctor asked us to try search full match from Indian origin through Donor drive. We, with the support of local NGO (Udham emergency blood donation) we did the drive at 9 locations nearby native place, from 25th May 6th June’17. to mobilize masses for swab test with the help from Delhi based Indian registry ‘Gene Bandhu’
g. 1765 volunteers gave the swab test. But after the drive, Gene bandhu did not pursued the testing of samples indicating their helplessness due to scarcity of funds, which was never disclosed earlier. They did nothing, knowing the fact that condition of child is very fragile & any delay in 2nd transplant could be fatal. Irony is that till today i.e 10th Sep’17, we are still not aware of what is the outcome of drive. How many samples have been tested & what are the results? This so called NGO, approved by Govt. Of India, did not disclose facts & kept us in all dark.
h. With failure of any positive out come from Donor drive, only hope left was donor from Israel. But again with huge delays in communication, her 2nd transplant was planned on 24th July’17, more than 2.5 months after donor from Israel was identified, despite of paying Rs 1.985 millions to Datri for stem cell collection from Israel.
Meanwhile the health of Ishnoor deteriorated. She suffered from high fever, lung infection and Gingivitis. To add more, she went on ventilator on 21st July’17, bearing all the pain by herself. She was an innocent child, unable to express her pain and sufferings but hopeful of living a healthy and normal life. And for this, she borne all the pain but due to severe complications, her inner strength shattered and she left this unkind world on 22nd July’17 just 2 days before her 2nd transplant was due.
Who is to be blamed for her death;
· The doctor who did not planned proactively right from first day of her treatment & their arrogance/ inexperience in handling post transplant care.
· The Indian registry whose claimed to be NGO’s but remained very casual to protect interest of the patient
· The insensitivity amongst doctors & concerned registry; resulted into 2.5 months of delay in arranging 2nd donor.
· Our social network; wherein our inventory of donors ( Cord blood & PBSC- Phepherial blood stem cells) is too low to find a suitable match for her on time
She could have been saved :
. Had the doctors planned proactively & asked us for donor drive 8 months ago, searched for donor world wide & knowing the fact that she needs BMT but has no matched related or unrelated donor.
. Had the Indian Registry ‘Gene bandhu’ helped to test the Donor Drive samples in time to identify matched donor.
. Had the stem cells form donor from Israel arranged well in time, which in this case were delayed due to too much of communication gap between the attending doctor & the related registries ( Indian registry’ Datri & Isreli Registry ‘ Ezir Mizion’.
. Bone Marrow Transplant, as such it isn’t just the disease that killed her – it’s the wait.
In all above cases, similarities are:
· All five families had education and resources to do what it takes & they have paid the huge amount as asked by Indian registry. Beyond to imagine the plight & unheard cries of 85% patients who are uneducated & too poor to afford money for treatment.
· All were young, has very strong will power to fight the disease.
· All have gone for want of timely availability of stem cells, as in 2 cases donor backed out & in one there was huge delay.
· In all cases, doctors did not act proactively & had no alternate B plan in case donation from identified donor is not available on time.
· Registries failed to demonstrate learning from failure as the reasons are just repeated mistakes.
There are many such Ishnoors, Nalinis, Arjuns, Pranav’s & Harleens whose tales remain buried & never brain stormed to introspect what went wrong leading to their tragic demise. Their miseries & hope in counting days that one day they will find suitable match can never be expressed. Their pain, agony can never be described in words, but can be felt only; especially by those who have passed through the toughest phase of life struggling for survival. But only few lucky ones get timely & adequate support to cross the valley of death & most of the unfortunate ones just die mid way unable to explain their miserable efforts, pain & the anguish of the disease.
Keeping everlasting experiences of miserable 11 months of Ishnoor’s hospitalization & to make her noble dream come true to serve the needy, i am posting this note to all worthy readers to please read & vote to plead the Govt. authorities to save our generation by formulation of comprehensive policy to ensure that huge population of patients in our country especially the young children suffering from life threatening diseases like Leukemia, sickle cell anemia, Lymphoma & other blood related disorders who rely on bone marrow / stem cell or cord cell transplants, can be saved by providing better health care.
We in INDIA has huge potential to have sufficient inventory of donors to make these blood components available & affordable to a common man without letting them die in wait, which as of now profit making Indian registries has failed to deliver .
2. Alarming facts:
About 3 million Indians are diagnosed with cancer, between 5% and 10% of them with blood cancers & other blood related disorders who could benefit from Bone Marrow Transplantation:
2.1. Blood & Lymphatic system cancers which includes Leukemias (Acute Lymphocytic Anemia (ALL), Chronic Lymphocytic Anemia; Acute Myelogenous Anemia (AML), & Chronic Myelogenous Anemia (CML); Hodgkin’s & Non-Hodgkin lymphomas and Multiple Myeloma.
· India is having 3rd highest number of Hematological cancers in World, after US & China. There were an estimated 104,239 cases of Leukemia in 2010, 117,649 in 2015 and projected to increase to 132,574 in 2020. (Ref. the ICMR Incidence data generated by population-based cancer registries in India).
· Every year over 120,000 Indians are diagnosed with blood cancers and an estimated 20 million carriers and 10,000 children are born each year with Thalassemia Major. Every day, about 325 people are diagnosed with blood disorders in India. Though people with blood disorders like Leukemia, Lymphoma, and Thalassemia can be cured through a blood stem cell transplant from a genetically matched donor, there is only a 25% chance of finding a match from within the family. People who do not find matches within the family have no option but to rely on genetically unrelated donors. But what are the chances of finding a match who is willing to be a donor? It is “Anywhere between 1 in 10000 to 1 in 2 million”.
· For many such patients, peripheral blood stem cell (PBSC) or umbilical cord derives stem cell (USC) transplantation offers the only cure. They can hope for a 40 to 80% chance of cure, if they find matching stem cell donors. The chance of finding a donor in the family is less than 25%.
· Leukemia is the most common childhood Cancer, being 25 to 40% of all childhood Cancers.
· Leukemia & Lymphomas are the largest contributors of death in children with Cancer.
· The survival rates for ALL in children is 45 to 55% in India as compared to 60 to 85% in Europe & USA.
· Allogeneic bone marrow transplantation is the only potentially curative treatment for CML, ALL, AML.
2.2 Aplastic Anemia: This potentially lethal disorder is caused by a variety of reasons & leads to severely low production of all cells of the bone marrow. While incidence of Aplastic Anemia in the western world is estimated to be around 2 per million populations, in India and other Asian countries it is 3 to 4 times higher than the west.
2.3. BMT is usually the only chance for a cure. Umbilical cord blood and peripheral blood stem cells are two other widely used sources for stem cell transplants.
2.4. Every year 40,000 patients die because of Not finding a voluntary stem cell donor in India.
2.5. Every big city in the United States has 2-3 BMT centers which means about 150-200 centers across the country. In comparison, India, with five times its population, has just handful of hospitals which offer Bone Marrow Transplant, as such it isn’t just the disease that kills most blood cancer patients in India – it’s the wait.
2.6. There are over 24.6 million adult volunteer donors and over 500 000 umbilical cord blood ( UCBs) listed in the collective files of Bone Marrow Donors registries Worldwide ( BMDW). Our percentage of share is in fractions against US share of appox. 50% as per data from National Marrow Donor Program (NMDP) with over 11.2 million adult volunteer donors and over 250 000 UCBs.
2.7. NMDP database contains just 230000 (only 1%) US donors with south Asian ancestry and has been the only very limited source of many unrelated donors for patients in India.
Data on global surveys reveals Indians are genetically different, and hence, the third toughest race to find donors after South Africa and China The search for potential donors to South Asians is difficult because of the diversity in the population’s HLA
2.8. Though the population of India is several times more than USA & Europe, the Haemopoietic Stem cell transplant (HSCT) activity In India is negligible; total failure to deliver standard of care curative treatment strategies for blood related cancer in India. (https://www.omicsonline.org/open-access/autologus-stem-cell-transplantation-for-cancers-india-2017-2155-9864-1000379.php?aid=91139
2.9. In a country where over 1,00,000 Indians are diagnosed with blood cancer, thalassemia and aplastic anemia, the demand for blood and bone marrow transplant far outweighs the supply. In a nation of 1260 million people, we have only 0.2 million people as donors just 0.0158% of population against 7.31%, 2.51% & 1.6% & in Germany, USA & U.K respectively. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4375143/
2.10. State wise condition of number of registered donors is pathetic. With Kerala having over 19,000 donors followed by Tamil Nadu (over 16,000) and Karnataka (over 10,000), West Bengal has 2,369 blood stem cell donors, which is a small number compared to its population.
2.11. Today there are almost 200,000 registered donors in the various registries in India, mean probability of identifying 10/10 match within India is only 39%. Means 61 % the patients do not have any readily available full match. It is shocking how such patients just die due to non availability of donors despite of knowing that we have the huge potential due to huge population. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3350357/
2.12. Adult donor matching at the 10/10 level is difficult. Data also show that even if the Indian registry were to grow to 1 000 000 donors, less than two-thirds of patients would have a 10/10 match.
2.13. Probability of identifying 9/10 match is little high 56% & use of a 9/10 matched donor is possible with satisfactory survival, but patients who receive mismatched adult donor transplants have higher morbidity and mortality than those who have a 10/10 match. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3350357
2.14. In a vast country like ours with a population of 1260 million, we need 25 million donor to fulfill our 100% requirement to serve our patients with full match, against just 0.2 million registered donors at present. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3350357/
2.15. This pool of 0.2 million registered donors’ dissolves further as not all go through with a donation once called upon.
2.16. At present, patients in India are more likely to identify a match outside of the county than within.
2.17. With in Indian geographical regions the Probability identifying full match is highest in Haryana (81.2%), Bihar (75.6%) , MP (72.7%) & Punjab ( 70.5%) followed lowest in Maharashtra (48.6%), Orissa ( 45.7%), &UP (44.2%) & TN (43.3%) .https://www.ncbi.nlm.nih.gov/pubmed/27030155
2.18. Mean probability of identifying a 4/6, 5/6 & 6/6 matched umbilical Stem Cells (cord blood unit -USC) from umbilical cord blood registry size are higher than PBSC. https://www.ncbi.nlm.nih.gov/pubmed/27030155
2.19. Umbilical cord blood ( USC ) might be a more attractive source of stem cells, but it has its own limitations. Stem Cells from donated cord blood can help children with a body weight less than 30 Kg. These cells take longer time to set the graft. This longer time can be detrimental for patient to catch infection. Other patients will need a larger number of cells and that can only be obtained from a donor either as Peripheral Blood Stem Cell (PBSC) donation or Bone Marrow Donation.
2. 20. With birth rate of 19.3 births/ 1000 population, 73787 children take birth in India per day. Barring fraction of percent, USC’s of all new born are just put in dust bin, which otherwise if managed can be the source of cure to treat patients of the whole world.
3. Drawbacks of prevailing system in India:
· Data on global surveys reveals Indians are genetically different, and hence, the third toughest race to find donors after South Africa and China.
· The need is to find donor for Indian any wherein the world in India itself is one of the toughest task today.
· We are facing appox. 40000 deaths per year due to lack of availability of matching donor to the patient on time, mostly the children in their young age & this number is growing substantially since last few years.
Most of the Patients do not die just due to disease but due to delays & in wait.
4. Reasons for majority of deaths:
4.1 Non availability of matching donor with our registries
Probability of match donor to Indian patient is just 39% against only 29% in actual. In a nation of 1260 million people, we have only 0.2 million people as donors just 0.0158% of population against 7.31%, 2.51% & 1.6% & in Germany, USA & U.K respectively.
Lack of awareness: Only 3% of our population knew about such therapies involving stem cells.The myth that marrow donation is a painful and risky procedure people do not come forward. There are no test facility available in India for HLA typing. Cost of testing HLA is too high Rs 6000-20000/ person. Volunteers donors despite of their will do not afford to bear the high cost.
4.2 Donor withdrawal
“Even if a match is found, there is a fear of the donor being unavailable,” High levels of illiteracy in India add to the problem. “In large parts of the country, nobody knows what a marrow or stem cell is or what a disease called leukemia is. “Sometimes donors join the registry during the appeal of a patient in need; they join to help save that person’s life. Inevitably, they aren’t a match for that person but come up as a donor entirely for different patient.” “Unfortunately, they say no even if we have educated them to the fact that they are more likely to match someone else in need from their ancestry”
a. Indian registries approved by Indian Govt. As NGO’s to support the patients do not care to retain the donors. Their attempt is just to show the numbers of registered donors with them. Hardly attempt is made to retain them. Donor drives are just Person Centric & The publicity campaigns are tilted towards emotional side rather than robust, informed consent.
b. Lack of trust with the registry. Once the drive is over, registries do not inform the donors about the outcome of drive, their test report etc are not shared.
Registries are too slow to create Mass awareness and need for reinforcing the message. While in India some drives happening in large cities are publicized on pages of the newspapers, there is complete absence of public information cum education program demystifying stem cell donations.
There is no code of conduct actually practiced to deal with donors nor is any provision to investigate commitment and ethnicity.
There is no legal commitment/ binding to donor too; he/she may back up any point of time, irrespective that patient’s death is certain if withdrawal is at later stage.
4.3 Delays in transplant
Total insensitivity on part of doctors & the Govt approved registries to communicate effectively. Ultimately patient is the only sufferer, who pays his/her life.
The procedure to communicate between doctors to Indian registry & then worldwide, is lethargic & time consuming. There is neither time commitment nor accountability by which one has to complete the task. Doctors, registries just work as per their convenience rather than interest of poor patient whose life is at stake.
5. What we need to do to save our generation/s to build India a healthy India.
We in India have huge potential to make our dying patients survive by ensuring timely availability of stem cells PBSC, USC at affordable cost.
The present state is that, there are no guide lines for who has to what & when, no govt. control, no accountability, no fear of punishment, no answerability, no learning from failures/ deaths, no future plan, in this most important but totally neglected field of treatment.
People are dying especially the young, govt. approved registries are earning like anything from pockets of poor patients, no sympathy, no regret for deaths in case of delays, no action plans on surface, repeated failures, doctors just do whatever suits them, the cries of patients just go silent with them totally unheard.
· Who is to be blamed for innocent deaths?
· Who is accountable to ensure better health care to them?
· To whom one has to complain for medical negligence by doctor or the concerned registry, there is no clarity.
What happened to my daughter may not happen to others is the striking factor to let us revolutionize the awareness of the need & plead the Govt. to take immediate actions so that patients right to live & lead a productive life is protected & ensured.
There are certain aspects of donor enrollment/registration, which may have a role to play in ensuring that match is available, shall be converted into a donation on time.
Awareness is the key to building;"Not many people know that they could be the only hope for a patient’s survival. Also, a lot of them do not know that a Peripheral Blood Stem Cell donation is a simple, harmless and a short procedure. The need is to educate and earn trust because there are so many irrelevant taboos and cultural factors to overcome.
5.1. In fact, “indefinite anxiety regarding stem cell donation”, and “lack of detail information about the registration process” are the reason that people would not register for donating their stem cells.
Therefore, the registration process is an important content that should be included in an education program start from high school level to colleges & universities.
5.2. A number of researches & campaigns are there to make people aware of effective treatment through organ donation, But hardly any research has been reported, published, campaigned in India regarding PBSC. The research focusing on awareness on PBSC is scarce.
Print media/ social media / NGO’s should be given some targets & benefits to create awareness at grass root level about the disease, its implications, treatment, cost, treatment centers in India, donor awareness, stem cell banks, registries etc.
5.3. Central / state governments of Haryana, Bihar , MP & Punjab should have comprehensive plans tap their population to build strong base of donors due to very high probability >70% of finding the match with patients against other states like UP, Maharashtra, TN, AP, Orissa with too low probability ranging from 40-50% only.
State governments of Haryana, Bihar , MP & Punjab should take lead or asked to take lead to establish stem cell banking, donor registries & medical centers to treat patients with PBSC transplants.
5.4. Additional barriers to donation (eg, the donor’s medical condition, ability to be contacted and personal withdrawal requests) would result in a lower effective match rate. Registries are just adding the numbers to publish their donor strength, but in actual the number is too low to mention.
More detailed analysis might be needed, similar to that done for studies investigating commitment and ethnicity in the US registry which, in turn, might depend on the collection of more detailed information on the donors (eg, caste, language, and sociological attitudes, relational ties; religious beliefs; cultural influences; family influences; etc.).
5.5. College and graduate students have become a key focus for marrow donor registration as they are young, healthy, well educated, more open to new information, and part of a community. College and graduate students are easily accessible and important group to target.
Educational interventions, a well-designed and developed promotion program, focusing on this target group can increase PBSC registration and have the potential to improve patient outcomes thus save lives.
5.6. Health promotion must be focused to non-health science institutes along with community health and awareness for a healthy future so as to promote healthy living.
Gram panchayats, zila prishads, municipal committees, state run red cross societies and national service schemes, should have plan & funds for health promotion.
5.7. Registries must not take Person Centric Drives wherein the publicity campaigns are tilted towards emotional side rather than robust, informed consent. Need is to ensure person commits to be a stem cell donor and not just 'a stem cell donor for such and such person.
Donor drives should be transparent with full disclosure of facts & knowledge to donor. Consent signing should be on the same document where facts are published.
5.8. Today the events of success are highlighted from the patient's viewpoint. The news media reads - so and so was saved because of donation of stem cells by an anonymous donor. While maintaining the anonymity between patients and the donors is necessary, there is a need for more news like so and so donated stem cells to an unrelated anonymous patient and helped save life. While patient focus may help the bottom lines of the institutions which treat complicated cases, donor focus will definitely contribute to more participation and better conversions.
Print & social media, TV channels should be instructed to air, success stories of donors & be given platform to share their vies to public to increase participation.
5.9. A study of National Marrow Donor Program, USA suggests that procedures used at individual donor centers may dramatically impact donor unavailability. Investing in counseling about informed consent and the importance of following through with the donation is far cheaper than the cost of HLA typing itself. While there is an urgent need to expand the registry of enrolled donors in India, care has to be taken to direct the scarce resources in a manner that is likely to lead to best results. The implications of saying no should be highlighted in no uncertain terms at the time of donor enrolment even if it risks deterring people.
Leanings from National Marrow Donor Program, USA be studied & incorporated to formalize donor registration process. which helped them to register committed donor much more in number than we have in India, despite of their low population base.
5.10. An occasional add on the TV, campaigns in social media about voluntary blood donation where young people are shown happily donating blood definitely, has helped to de-stigmatise blood donation in general and contributed to change social mindset. Govt. to enforce such initiatives be taken for stem cell donation derives also.
Hospitals, primary health centers, red cross societies should be given funds & should have target to register donors. National service scheme ( NSS) should include such drives in their programme.
5.11. Once the enrollment is done, registries must ensure to reinforce the message and renew the commitment.
Registries should share detail of registered donor/s with secretary red cross or Chief medical officer of the district to stay in touch with donors registered with in his/her territory.
5.12. Registries take huge money from patients for ensuring availability of mated donor. But in actual some cases due to withdrawals, delays in donation, patients just die in wait. Money is returned back to patient after deductions. There should be some Govt Check / law to penalize such registries who fail to deliver its commitment.
Death due to donor withdrawal should be made a criminal offence & law should clearly state life imprisonment with no different / ambiguous interpretation by legal fraternity.
5.13. In the developed countries, there is a government run countywide registry of all the people who have become voluntary donors and have had their HLA typing done. These country wide registries are then linked to a worldwide registry called ‘Bone Marrow Donors Worldwide’ (BMDW). But we in India did not have any visible Govt. control over so called NGO’s named as ‘registries’; who at present are just profit centers & exploit the patients to fill their lust for money. Who is controlling them & has a watch eye to notice their mal practices, to whom these are accountable, is not known & not even highlighted by media. Govt. has to make stick guide lines to curb malpractices of their approved registries to avoid exploitation of the patients leading to their death some times.
Central govt should have an apex body coordinating & regulating the country wise registries with some frame work of law. The apex body should be given powers of a tribunal to take action in case of deviations.
5.14. Govt. to initiate mass movement to create awareness for public sector stem cell banking.
Must create infrastructure ensure their testing & storage for ALL NEW BORN, in a defined phased manner.
5.15. All HLA typing tests are sent overseas and the cost involved is humungous. Can you believe there is not a single laboratory in India doing this testing? Here is where we need our government to wake up and help the half million people suffering from blood disorders.
In India we should have facility to test & match HLA at affordable cost.
5.16. We in India have failed to stop, stem-cell providers from charging patients huge sums to administer unproven therapies, either because appropriate regulations do not exist or because they are not enforced. Whatever the doctors do in the name of research they should follow the ICMR guidelines. But the problem with the stem cell therapy is that those who are offering therapy don't consider it as research. They think that it is therapeutic any doctor has the right to give treatment so they are doing their practice it does not come under research. So there is no need for any permission and there is no need to follow any guidelines; you really can't punish them. There is no law to punish such doctors & . There are no medical courts to listen such cases. There are not enough advocates who can plead & prove the case of medical negligence. Cases of medical negligence are probed by consumer courts, whose judges are neither familiar with medical terms nor can estimate the quality of given medical treatment.
There should be medical courts just like civil or criminal courts. Or section of current the consumer courts be headed by medical expert of integrity. Patient’s family should be given right to probe the death & be given platform to register the complaint.
5.17 State governments should provide financial support to poor patients for their treatment under various schemes.
Taking example of patients suffering from Blood cancer , the actual cost of treatment to 15-20 times higher than the govt support of 1.5 lakh rupees to each patient irrespective to his/her financial condition. Help of just 1.5 lakh to a poor patient leaves him/ her mid way of their treatment & the whole purpose of help gets diluted if the treatment is stopped mid way just due to shortage of funds with the patient.
Suggestion is: That money be sanctioned based on the stage/ type of medical treatment. If the patient is just left over to chemo as the final treatment, govt. should provide Rs.10-15 lack to those patients who are not economically sound, has no insurance cover, has no reimbursement & no support from any NGO or the third institution. Further if the treatment is stretched further to Bone marrow transplant, the financial support is to be further extended by another 10-15 lakhs. Mere support of just Rs 1.5 lakh to all patients is to be reviewed & also the amount.
5.18 In most cases, it is seen that once the cancer is diagnosed, patients/ attendants are not aware of where to go for treatment. Mostly they get not trapped in places where they lose each of their assets & are seen on roads just begging; neither the patient is saved nor cash/ property is protected.
Suggestion is that electronic media, print media should come forward for rescues by publishing the list of hospitals & their appox expanses for treatment for public awareness to take right decision.
Such awareness programmes should be made must for all media houses under guidance of press council of India, ministry of information & public broadcasting, public relation depts. of states to aggressively plan & spread awareness in regional languages.
The summary is that For better handling of medical procedure, Need is to synchronize govt. institutions, partner registries, legal fraternity, other NGO’s, health care hospitals, education institutes, general public & the concerned ministries at centre or state level to ensure stem cell transplantation is given the same importance & the legality like other organ transplants, considering the fact that it has more quantum of risk to life & very high cost of treatment. Distt. Wise or state wise apex committees, counseling centers be formed reporting to the central level tribunal to monitor & regulate the complete network of stem cell transplant. to make it affordable & approachable to the satisfaction of common man..
Here is where we need altruistic people of India to come forward and partake their stem cells for unrelated, yet immunologically matched sick citizens of this nation …….and request govt. to intervene & formulate policy to ensure interests of patients are protected, his/her right to live is supported, efficiency of treatment is monitored, accountability is fixed & reviewed in a transparent manner.
Let us be a part of efforts to save our generations, dying for want of stem cells & transparent better health care
Let us build India a supportive India for Blood Cancer Patients.
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