What homoeopathy has to offer in the rare disease scenario of India: an overview

INTRODUCTION

A rare disease (RD) is one that affects a population infrequently.^1-3 It is estimated that there are about 7,000 RDs, 80% of which are genetic. Only 5% of the 7,000 RDs are treatable.^4-6 There have so far been 450 RDs reported in India. It's expected that between 72 to 96 million people in India suffer from RDs.⁷ Although under-reported, this number is based on the global population prevalence of RDs, which is estimated to be between 263 and 446 million affected people worldwide at any given time or between 3.5 and 5.9%.⁸ Blood disorders, lysosomal storage disorders, primary immunodeficiency disorders, mitochondrial illnesses, neurodegenerative diseases, and musculoskeletal problems are only a few examples of RDs that have received attention in the country.⁹ The majority of these illnesses are chronic and degenerative, resulting in severe impairment that gets worse with age. Patients with RDs thus generally require specialized supportive care. In contrast to other diseases, RDs have substantial direct and indirect costs. The country's greater dependence on imported medications, inadequate treatment facilities, and delayed diagnosis are the main causes responsible for the high costs. Although over 95% of RDs are incurable, the existing treatments are also expensive, in part because patients need them for their entire lifespan. Also, the majority of these treatments necessitate the purchase of costly medications, whether it is biological or non-biological. This can make patients even more financially burdened.^10,11

A few of the examples reported that the international price of Spinraza (Nusinersen), a drug used to treat spinal muscular atrophy (SMA) is approximately US$ 375,000 per patient.¹² In the international market, the chemical chaperone Migalastat, which is used to treat Fabry's disease, could cost about US$ 310,000 yearly.¹³ As these drugs are not produced in India, the cost of importing such medications increases the cost of purchase, raising the entire expense of local treatments. Therefore, it is essential to create long-term regulatory frameworks that could reduce and ultimately eliminate such expenses. All patients should have equitable access to timely diagnosis, clinical management, supportive therapies, and treatments to such enablers. The need of the hour is to have in place a well-defined national policy framework with the ultimate goal of curing RDs. Until this is made possible something that can help to mitigate this problem up to some extent should be thought of. The best-supporting solution for the current scenario of a RD in today’s world is homoeopathy. Homoeopathy had proven over the years that it works by interacting with the genetic code. From a mechanistic perspective, fundamental homeogenomic research has shown that homoeopathic medicines can also promote DNA methylation and other epigenetic alterations.¹⁴ This research can be the ground plan for many studies to be carried out to evaluate the role of homoeopathic medicines in treating/somewhat alleviating the symptoms. An attempt had started since 2007 in mitigating one such genetic disease-haemophilia. Several types of studies on this particular disease had been carried out by many researchers. But role of homoeopathic medicines is described by Kundu et al as yet.

DIAGNOSIS OF RARE DISEASES

Early diagnosis of RDs is challenging due to some factors, including a lack of awareness among primary care physicians and poor screening and diagnostic facilities. India, a resource limited nation (RLN) lacks the resources needed to diagnose these genetic diseases.¹⁵ Because there aren't enough specialized clinics equipped for diagnosis. The organization for RDs in India (ORDI) believes that a genetic disorder often takes seven years on average to be detected.¹⁶ A specialized diagnosis could be exorbitant.¹⁷ Additionally, the dearth of clinical geneticists worsens the situation. Running specialized clinics and training courses for specialists could therefore significantly reduce the time it takes to diagnose a patient.

TREATMENT AVAILABLE

As discussed earlier, majority of the RDs require lifelong treatment. For a considerable period, this might not aid in leading a healthy life. For example, patients suffering from haemophilia require factor infusion after any kind of internal and external hemorrhage. The continuous visits to the hospitals and clinics are also the time-consuming process. In this scenario not only, the patient suffers but also the family is involved indirectly. This condition is enhanced by the cost of the treatment.¹⁰ Lack of medical insurance options to pay for these expenses increases the financial strain on these patients and their families.

ECONOMIC AND SOCIAL BURDEN OF RARE DISEASES

The socioeconomic load could be analyzed in terms of direct and indirect expenses. Former imposes a disproportionate financial burden on the patients and their families as a result of the expensive diagnosis, treatments, therapies, medications, and hospitalizations as needed. A study reveals number of absenteeism from school and works by patients suffering from haemophilia. Physical activity is restricted due to acute pain and suffering if treatment is not available.¹⁸ There are almost 36.5% of hemophiliacs who are school dropouts and unable to attend regular school on account of bleeding and pain.^19-21

The analysis and source of this overview was based on our years of experience and published research articles.

AN ATTEMPT TO MITIGATE SOME RARE GENETIC DISEASE

An attempt was made in providing symptomatic treatment for a genetic disorder like haemophilia where the body’s ability is impaired to form a blood clot, a process needed to stop the bleeding. The majority of general practitioners would see only a few cases throughout their lifetime practice.²² Doctors of HIH research center Nashik, are currently treating more than 1300 haemophilia patients using homoeopathic medicines which is 5.27% of total haemophilia patients (25384) registered in national haemophilia registry India. This is according to the annual global survey 2021. The total numbers of haemophilia camps conducted by HIH till December 2024 are 503 at 8 different centers like Nashik, Parel (Mumbai), Surat, Amravati, Thane, Nagpur, Dhule and Chatrapati Sambhaji Nagar. The total number of haemophilia awareness programs/ scientific CME/ seminars conducted are 42, and also enlisted in the Indian books of records. HIH published 15 haemophilia related research papers consisting of 7 case reports and 3 Research papers other than haemophilia consisting of Glanzmann’s Thrombasthenia, afibrinogenemia, and idiopathic thrombocytopenic purpura (ITP) and etc.^23-25 Homoeopathic medicines when given based on symptom similarity to the patient with haemophilia (PWH) during the bleeding phase, successfully controlled the bleeding and prevented the complications. Similarly, few researchers in addition convincingly demonstrated the satisfactory results produced by homoeopathic medicines, one of those being-the efficacy of homoeopathic medicines in reducing the need for factor concentrates in haemophilia patients, a double-blinded placebo-controlled trial.²⁶ Management of acute bleeding with homoeopathic medicines in severe haemophilia patient showed positive results.²⁷ Hemophiliacs taking Homoeopathic medicines showed tuned parasympathetic modulations. The Autonomic responses were altered and therefore alleviation of the symptoms was possible.²⁸ Homoeopathic medicines reduced pain and frequency of hemarthrosis in PWH.²⁹ Two evidence-based case reports described the effectiveness of homoeopathic medicines in scrotal hematocele and, non-healing scalp wound in a child with haemophilia.^30,31 Homoeopathy had even shown its results in reducing the inhibitor titers in inhibitor positive patients with haemophilia.³² Homoeopathy not only alleviates the suffering of these patients but also reduced the cost, involved in the management of a large number of hemophiliacs in India.^33,34 Homoeopathy also postponed the disability in the hemophilia patients and have maintained the optimum quality of life.³⁵ By doing so parental anxiety and stress is also been minimized.³³ Also, the number of absenteeism which is more due to extreme pain and discomfort is reduced.¹⁸ New approaches have also been utilized like telemedicine.³⁶ Emergency homoeopathic medicine kit provided to the PWH residing in rural areas which are devoid of modern medical amenities facilitates immediate management at home in case of emergency. Even in cases where the genetic disease is complicated with psychiatric disorder like Schizophrenia and intellectual disability homoeopathy had worked well.^37,38 Earlier, the usage of homoeopathic medicines in genetic diseases like haemophilia was seldom but since the establishment of the HIH research center it had increased to 43.5%.³⁹ Apart from haemophilia A and B some other genetic diseases like sickle cell anemia, beta thalassemia, Duchenne muscular dystrophy and apinal muscular atrophy, von Willebrand disease, factor II deficiency, factor III deficiency, factor V deficiency, factor VII deficiency, factor IX deficiency factor XI deficiency, factor XII deficiency, factor XIII deficiency, Glanzmann thrombasthenia, afibrinogenemia like diseases are also being treated at this centre.^23,31,37,38

HOW HOMOEOPATHY CAN ASSUAGE THE DISCOMFORT CAUSED BY RDS: A NEW APPROACH

Homoeopathy-the therapeutic science is based on the principle of symptom similarity.^40-48 According to Dr Samuel Hahnemann’s philosophy, Psora the fundamental miasm is responsible for the causation of these diseases.^49-51 However, cure for these diseases is not possible, only Palliation is the way left. But the genetic load of an individual carrying the hereditary character can be reduced using these medicines.⁵⁴ Homoeopathy includes medicines from various sources with a vast literature.^52-54 Every medicine has its constellation of symptoms which forms a peculiar picture of that medicine. Single medicine (Similimum) when given for a person treats the person as a whole including his mental generals, physical generals, and characteristics disease in particulars. In addition to it, the cost incurred in the treatment using homoeopathy is cheap as compared with the standard treatment available.⁵⁵ Patients now choose the homoeopathic system of medicine that relieves the symptoms, reduces the severity of the disease and maintains the quality of life of the patient and also the family members. Adding homoeopathic treatment in the protocol management of these RDs will be beneficial for the government to cut down the cost of management required.³⁴ Complementary and alternative medicine (CAM) is growing in popularity day by day, and in India, it is advocated by the ministry of AYUSH, govt. of India. Lastly, the point, to sum up, is-homoeopathic system of medicine should be incorporated into the standard protocol for the management of rare genetic diseases.^56-61

CONCLUSION

When resources for the management protocol are limited, symptomatic homoeopathic treatment, in context of a particular patient suffering from a RD, can minimize patient’s problems and government’s economic burden.

ACKNOWLEDGEMENTS

Authors would like to thank to Dr. Afroz Shaikh.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: Not required

REFERENCES

1. 1. Rajasimha HK, Shirol PB, Ramamoorthy P, Hegde M, Barde S, Chandru V, et al. Organization for rare diseases India (ORDI)-Addressing the challenges and opportunities for the Indian rare diseases' community. Genetics Res. 2014;96:e009.
2. 2. Khosla N, Valdez R. A compilation of national plans, policies and government actions for rare diseases in 23 countries. Intractable Rare Dis Res. 2018;7(4):213-22.
3. 3. Katoch VM, Majumder PP, Bhattacharya A. Rare diseases need our attention. Curr Sci. 2016;111(1):7-8.
4. 4. Gahl WA, Markello TC, Toro C, Fajardo KF, Sincan M, Gill F, et al. The national institutes of health undiagnosed diseases program: insights into rare diseases. Genet Med. 2012;14(1):51-9.
5. 5. Taneja A, Shashidhara LS, Bhattacharya A. Rare diseases in India: Time for cure-driven policy initiatives and action. Curr Sci. 2020;118:1500-6.
6. 6. Pingali V, Das N. Rare diseases require support too. Vikalpa. 2021;46(2):129-34.
7. 7. Katoch VM, Kabra M, Bhattacharya A. Policy towards finding cure and management of rare diseases. Jawaharlal Nehru University and World without GNE Myopathy (India), Recommendations. 2017;3-19.
8. 8. Nguengang Wakap S, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Euro J Human Genet. 2020;28(2):165-73.
9. 9. Bhattacharya SU, Katoch VM, Majumder PP, Bhattacharya AL. Rare diseases in India: current knowledge and new possibilities. InProc Indian Natl Sci Acad. 2016;82(4):1183-7.
10. 10. Sukumaran A. Am I going to live? Genetic diseases leave 70 million Indians at God’s mercy. Outlook Magazine. 2019;1-6.
11. 11. Nair KS, Raj S, Tiwari VK, Piang LK. Cost of treatment for cancer: experiences of patients in public hospitals in India. Asian Pacific J Cancer Prevent. 2013;14(9):5049-54.
12. 12. Yates N. I have spinal muscular atrophy. Critics of the $2 million new gene therapy are missing the point. 2019. Available at: https://www.statnews.com/2019/05/31/spinal-muscular-atrophy-zolgensmaprice-critics/. Accessed on 10 December 2024.
13. 13. Canadian Agency for Drugs and Technologies in Health, Pharmacoeconomic Review Report on Migalastat (Galafold). CommonDrug Review Rep. 2018;1-30.
14. 14. Kay PH, Khuda-Bukhsh AR. The contribution of homeogenomic and homeogenetic studies in the support of the practice of Homoeopathy. Indian J Res Homoeopathy. 2016;10(2):101-7.
15. 15. Ghosh K, Ghosh K. Overcoming the challenges of treating hemophilia in resource-limited nations: a focus on medication access and adherence. Expert Rev Hematol. 2021;14(8):721-30.
16. 16. Rajasimha HK. Uniting and connecting >70 M patients with rare diseases in India with global initiatives. Organization for RareDiseases India and International Rare Diseases Research Consortium. 2017. Available at: https://ordindia.org/wp-content/uploads/2017/03/ORDI-IRDiRC-Conf-Paris-Feb2017.pdf. Accessed on 10 December 2024.
17. 17. Theodorou DJ, Theodorou SJ, Kakitsubata Y. Skeletal muscle disease: patterns of MRI appearances. Brit J Radiol. 2012;85(1020):e1298-308.
18. 18. Kar A, Phadnis S, Dharmarajan S, Nakade J. Epidemiology and social costs of haemophilia in India. Indian J Med Res. 2014;140(1):19.
19. 19. Kar A, Mirkazemi R, Singh P, Potnis‐Lele M, Lohade S, Lalwani A, et al. Disability in Indian patients with haemophilia. Haemophilia. 2007;13(4):398-404.
20. 20. MHRD, Educational statistics at a glance. Ministry of Human Resource Development. GoI. 2018. Available at: https://mhrd.gov.in/sites/upload_files/mhrd/files/statistics-new/ESAG-2018.pdf. Accessed on 10 December 2024.
21. 21. Dharmarajan S, Gund P, Phadnis S, Lohade S, Lalwani A, Kar A. Treatment decisions and usage of clotting factor concentrate by a cohort of Indian haemophilia patients. Haemophilia. 2011;18(1):e27-9.
22. 22. Evans WR, Rafi I. Rare diseases in general practice: recognising the zebras among the horses. Brit J General Pract. 2016;66(652):550-1.
23. 23. Kundu T, Kumat O, Mirza G, Motiwala F. Episode of Epistaxis in Glanzmann's thrombasthenia. National J Homoeopathy. 2020;22(4):62-5.
24. 24. Omkar K, Tapas K, Kanjaksha G, Gulfisha M, Rita K. Homeopathic management of afibrinogenemia along with beta‑thalassemia. AYUHOM. 2022;9:46-50.
25. 25. Kundu T, Kumat O, Mirza G, Kundu R, Singh, T. Homoeopathic Management of Chronic Pediatric Idiopathic Thrombocytopenic Purpura: Case series. Int J Res. 2022;10(11):202-12.
26. 26. Kundu T, Shaikh A, Afzal K, Aparna N, Ranjana K, Sudhir K, et al. Homoeopathic medicines substantially reduces the need of clotting factor concentrate in haemophilia patients: results of a blinded placebo controlled cross over trial. Homeopathy. 2012;101:38e43:2011.
27. 27. Kundu T, Shaik T, Singh P, Sheikh A, Kumat O. Management of Acute Bleeding in Severe Haemophilia Using Homeopathic Medicines: a Multicentric Case Series. J Homeop Ayurv Med. 2015;4:180.
28. 28. Kundu TK, Barde PB, Jindal GD, Motiwala FF. An Exploratory Study of Autonomic Function Investigations in Hemophiliacs on Homoeopathy Medications Using Impedance Plethysmography. J Evid Based Complementary Altern Med. 2017;22(4):760.
29. 29. Kundu T, Ghosh K, Shaikh A, Singh P, Sheikh A, Shah H, et al. Homeopathic Medicine reduces pain and Haemarthrosis in moderate and severe Haemophilia: A multi- centric study. Complement Med Res. 2018;25(5):306-12.
30. 30. Kundu T, Kumat O, Mirza G. Add on homoeopathic management of a scrotal hematocele in a diagnosed severe haemophilia patient: Evidence based case report. Int J Homoeopathic Sci. 2020;4(4):19-22.
31. 31. Kumat O, Kalda P, Kundu T, Binaykiya S, Kundu R. Significance of Individualised Homoeopathic Medicine in a case of Non-Healing Scalp Wound along with standard management in Moderate Haemophilia B Patient: A Case Report. Int J Creative Res Thoughts. 2022;10(6):f697-700.
32. 32. Shah H, Kundu T, Shaikh A. Homoeopathic Management of A Case Of Severe Haemophilia Type A With Inhibitor Positive: Case Report. Homoeopathic Links. 2020;33(4):302-8.
33. 33. Kundu R, Shaikh A, Kundu T, Mirza G, Kumat O, Ghosh K. Substantial reduction of cost of care of PWH by add on homoeopathic medicine reduced the parental anxiety and stress. Int J Hom Sci 2021;5(1):401-5.
34. 34. Singh P, Mukherjee K. Cost-benefit analysis and assessment of quality of care in patients with hemophilia undergoing treatment at National Rural Health Mission in Maharashtra, India. Value Heal Regional Issues. 2017;12:101-6.
35. 35. Omkar K, Kundu T, Kanjaksha G, Hiral S, Prapti K, Gulfisha M, et al. Add on Homoeopathy reduced the rate of hemoarthrosis in haemophiliacs which in turn postponed disability and improve quality of life in the age group of 8-20 years: A prospective multicentric study. Haemophilia. 2023;29(2):306-12.
36. 36. Kumat O, Kundu R, Rajput P, Kundu TK, Mirza G, Shaikh A, et al. A review of usage of Telemedicine for Management of Acute Bleeding Episodes in Haemophilia. Int J Hom Sci 2021;5(4):383-387.
37. 37. Omkar K, Gulfisha M, Kundu T, Kanjaksha G, Prapti K, Rita K. Add on Homoeopathic medicines alleviated Schizophrenia symptoms in Haemophilia B patient: A Case Report. Int J AYUSH. 2022:11(4);01-10.
38. 38. Shaikh A, Kundu T, Ghosh K, Kumat O, Mirza G. Factor XIII Deficiency Managed with Individualized Homoeopathic Medicine In Intellectually Disabled Child: An Evidence Based Case Report. Homoeopathic Links. 2022;35(04):307-14.
39. 39. Jadhav U, Mukherjee K, Thakur H. Usage of complementary and alternative medicine among severe hemophilia A patients in India. J Evidence-Based Complementary Alternative Med. 2013;18(3):191-7.
40. 40. Fisher P. What is homeopathy? An introduction. Frontiers in Bioscience-Elite. 2012;4(5):1669-82.
41. 41. Shah R. Symptom similarity versus disease similarity: revisiting the application of the law of similar and challenging the symptom-centric approach in homeopathy. Homeopathy. 2018;107(03):218-22.
42. 42. Watson I. A Guide to the Methodologies of Homeopathy. Cutting Edge Publications. 2004.
43. 43. Aversa R, Petrescu RV, Apicella A, Petrescu FI. About homeopathy or≪ Similia similibuscurentur≫. Am J Engineering Applied Sci. 2016;9(4):1-9.
44. 44. Bellavite P, Conforti A, Piasere V, Ortolani R. Immunology and homeopathy. Historical background. Evidence-Based Complementary Alternative Med. 2005;2(4):441-52.
45. 45. Walach HA. Entanglement model of homeopathy as an example of generalized entanglement predicted by weak quantum theory. Complementary Med Res. 2003;10(4):192-200.
46. 46. Teixeira MZ. Homeopathy: a preventive approach to medicine? Int J High Dilution Res. 2009;8(29):155-72.
47. 47. Bastide M. Homoeopathy: a communication process. British Homeopathic J. 1996;85(03):129-30.
48. 48. Chaudhary A, Khurana A. A review on the role of Homoeopathy in epidemics with some reflections on COVID-19 (SARS-CoV-2). Indian J Res Homoeopathy. 2020;14(2):100-9.
49. 49. Haehl R. Samuel Hahnemann, his life and work. InSamuel Hahnemann, His Life and Work B. Jain Publishers; 1983.
50. 50. Haehl R. Samuel Hahnemann: His Life and Work: Based on Recently Discovered State Papers, Documents, Letters, Etc. B. Jain Publishers. 2001.
51. 51. Hahnemann S. Organon of medicine. 6thedn. New Delhi: B. Jain Publication, Aphorisms. 1990;80-1.
52. 52. Kent JT. Lectures on homoeopathic philosophy. B. Jain Publishers; 2003.
53. 53. Kent JT. The art and science of homeopathic medicine. Courier Corporation. 2002.
54. 54. Roberts HA. The Principles and Art of Cure by Homoeopathy: A Modern Textbook. B. Jain Publishers; 1997.
55. 55. Kundu TK, Khuda-Bukhsh AR. Effective management of haemophilia patients with a combined therapy to reduce cost: A new approach. Eur J Biomed Pharmaceut Sci. 2018;5(5):748-51.
56. 56. Singh V, Raidoo DM, Harries CS. The prevalence, patterns of usage and people's attitude towards complementary and alternative medicine (CAM) among the Indian community in Chatsworth, South Africa. BMC Complementary Alternative Med. 2004;4(1):1-7.
57. 57. Roy V, Gupta M, Ghosh RK. Perception, attitude and usage of complementary and alternative medicine among doctors and patients in a tertiary care hospital in India. Indian J Pharmacol. 2015;47(2):137.
58. 58. Thirthalli J, Zhou L, Kumar K, Gao J, Vaid H, Liu H, et al. Traditional, complementary, and alternative medicine approaches to mental health care and psychological wellbeing in India and China. Lancet Psychiatr. 2016;3(7):660-72.
59. 59. Bhalerao MS, Bolshete PM, Swar BD, Bangera TA, Kolhe VR, Tambe MJ, et al. Use of and satisfaction with complementary and alternative medicine in four chronic diseases: a cross-sectional study from India. National medical journal of India. 2013;26(2):75-7.
60. 60. DuraiPandian J, Toor G, Arora R, Kaur P, Dheeraj KV, Singh Bhullar R, et al. Complementary and alternative medicine treatments among stroke patients in India. Topics Stroke Rehabilitation. 2012;19(5):384-94.
61. 61. Kumar D, Goel NK, Pandey AK, Sarpal SS. Complementary and alternative medicine use among the cancer patients in Northern India. South Asian J Cancer. 2016;5(01):008-11.