With years of operational experience on this website and being in the carer's shoes we know how it feels to be a carer for a new patient. So to make it a little better for you we are creating this onboarding algorithm to guide you from initial chaos to routine-driven care. This ensures that you are holistically supported while being the primary carer for CF patients.
Onboarding Guide - Quick and to the point
Step 1 - Diagnosis - In India a few labs can conduct genetic testing to establish the mutation of CF, please work with your doctor swiftly to get a diagnosis established. Some cities may also have facilities to conduct sweat tests and if it is available in your city you can work with your doctor to do that too. If the diagnosis is positive and you have an established case of CF, its important to get your family tested for genetic conditions. You should always talk to your doctors specially for newer pregnancies to take appropriate timely decision for increasing CF prevention in yet born kids.
Step 2 - Contact us - Please send us the below details to our email ID - care@cysticfibrosisindia.org.
a. Diagnosis reports
b. Doctor's prescription or any letter from them
c. Your phone number with WhatsApp enabled for communication
d. City and State
Step 3 - Community - We will add you to our Cystic Fibrosis Whatsapp group and there you can ask all of your questions regarding disease or any specific challenge you are facing and the parents will be happy to answer you. This the first line of support you get where shared experiences of others allows you to have a direction in challenging situations. This community not only shares experiences but also help you to navigate various stages of the CF kids growth. The community contains parent carers of kids will all age groups and thus the knowledge that comes out will be helpful as it is first hand experience of them. The CF trust also bring together the members once a year in the form of a Annual Conference and the community members are informed in advance for registration and participation. The community has people from all over India which can be helpful as you can meet people in your vicinity in difficult times or just for a chit chat. The community also promotes sharing of CF kids achievements to boost other parents that the CF kids can do wonder if given oppurtunity. These little warriors are role models who inspite of battling out dreaded condition are doing great in other strata of life.
Step 4 - OPD Medication and Routine Care - Now comes the navigation part for direct care of the patient among multiple options you have. So next immediate step for you is to visit the nearest Govt. Centers of Excellence. The goal here is to register your child for medicines upto 5 Lacs per annuum related to CF. Mostly these medication are what we in India call as OPD medications , the day to day medicines required for routine care. At the centre you need to submit a form that is available there or you can ask the community members for the details. Please take all the other documents like your Adhar card etc. which are required along with all medical reports and current doctors treatment. This process may take a little time so have patience but please follow it up if there are no updates. Its your responsibility to ensure that the registration is completed and you start procuring medicines. These centers of excellence have kept Caps considering the budget challenges and the next question that might come to your mind is what happens after these limits exhaust, so please refer to next step 5 for this.
Step 5 - Next OPD Support - In India being the next OPD support depends on the nature of your work. Lets take some typical cases and we will keep updating it as and when we learn more about the situations.
a. If you or your partners are in Govt. Jobs your employer will cover the medication costs beyond 5 Lacs so its best you talk to the Department Personnels for more details on this.
b. If you are in private job then most likely you will be covered by your employer. While employer insurance does not cover OPD medication but you can claim medications post IPD treatments and they will be covered. So something is better than nothing , dont forget to take advantage of this.
c. If you are in private job and have a salary threshold less than certain numbers please check with your employer is registered with ESIC- Employee State Insurance Corporation. This scheme also helps certain low incomes employee situation. Please contact your employer for more details on this and get your ESIC details from them if applicable for your scenario.
d. If you are in a business situation or private job with no insurance then unfortunately the situation becomes a bit tricky. After exhausting the limits and if it is becoming unaffordable you need to contact Local Charities, NGOs, Corporate Social responsibility, even the CF trust etc. to raise funds. The only suggestion is to not give up and work to find these and spread it back into the Cystic Fibrosis Groups to motivate other parents on how you manage those times. Times will change and once these kids get stronger they will take care of themselves so just support them.
The CF trust runs a discounted medicine delivery initiative thanks to core members of the group. If you want to take advantage of this service please talk to the group members , they will add you in the medication group and you will get discounted medicines. Please also note that due to well availability of Generic Pharmas and Jan Aushadhi , it will be suggested to find couple of shops near your place of residence who can routinely procure and deliver the medication to you. This ensure the continuity of meds after the COE medications are exhausted and reduce the excessive cost burden on you.
Step 6 - IPD Support - Cystic Fibrosis is a progressive disorder and a lot of times you will need to get the Kid hospitalized for various situations primarily due to Pneumonia or Intestinal Blockages. It is important to choose a hospital near your place of residence who can handle CF cases effectively, this reduces the travel burden. While the treating doctor will know the way to manage the situation effectively on clinical grounds the question comes to managing financial and work issues. For the work part - its in the long terms interest of your kid that you reveal the condition of the kid to the employer of course to the HR department formally. This allows them to be a little easy going on you specially during stressful times of hospital admissions where the wider team covers for you. Now comes the financial part and here again its all about IPD insurances and navigating it. Lets cover in part 7.
Step 7 - Next IPD Support - As with IPD this supports again depends on nature of work but there is a little more to it. The Central Govt Universal Health Insurance Scheme for eligible people.
a. The Central Govt runs Ayushman Bharat scheme for eligible people. Similarly you should also check on the state govt scheme. This gives general medical insurance upto a limit. So please enroll yourself if eligible in this scheme to get the treatment covered upto a certain limit. Learn more about scheme on your own.
b. If you or your partner are Govt. Employee then most likely you will be covered by medical insurance and you can talk to your department to know more about this.
c. If you are in private jobs you will be covered by medical insurance and please check with employers on the coverage of CF or other genetic disorders. Based on our experiences we know that most of the employer based insurance covers genetic conditions. So all admissions should be okay.
d. If you are in private job below a certain salary level ESIC - Employee State Insurance Corporation should be explored. You must talk to your department on this and understand the cover they provide.
e. If you are in business or not covered by any other employer insurances, then its best to take your own insurance. There are many companies in this space and which policy to choose from is a very complex question. Our recommendation will be to choose one with a good claim settlement ration and also which specifically covers CF. Some bank based insurances create group insurnace plans for their customers and using that your can cover your self to get benefit of group insurance while being individual. Although IRDA mandates are clear but we have conflicting experiences dealing with insurances cases where some covers and some rejects quoting genetic diseases. India as a whole is on the path on becoming a more inclusive society and that has to reflect into various orgs like insurances. Till till happens lets find the best fit for our cases. One last point in case you are not clear how to navigate your situation please contact CF group member before hospital admission , we have some special tips for you to get your the claim.
Step 8 - Special Situations- We pray that you don't get into this but in case there is a situation where you are financially drained and don't know where to get the resources from, some ways to get through this are -
a. Raise funds through Crowd Funding sources like Milaap, Ketto, ImpactGuru etc. Do whatever is necessary to get the funds. Contact these sites and work with them to get your case highlighted.
b. Try to contact your local MLA, MP - they have funds or contacts to get you the necessary funds. The reach is one of the major challenge but try it.
c. Contact local media houses and social media to bring your case to highlight and see if you can get some help.
d. Contact NGOs etc. who can help to get to Celebritities who can appeal for your case.
e. Try to tap on the CSR funds by targetting your local big companies.
These are panic times and with a calm approach you can get over with it. Help is there and we need to work through it. We really pray no one has to go bankrupt to make their loved one survive a special situation. We are with you in this battle and always post on the CF group for more help.
Step 9 - Time Management - Battling out CF is challenging both physically and mentally. Thus time management is a crucial aspects of this. There are some medicine reminder apps available using which your kid can manage the timely compliance to the medicines. There a lots of other resources to effectively manage the time but the key here is following doctors advice without burning yourself out and there time management , getting extra supprt from family members, hiring nurses etc. is useful. This is an open topic and highly depends on you but the only guidance we have here is talk to Community members for your specific situation and there will always be some solution for you.
Step 10 - Beyond CF - Although our primary focus in on CF but thanks to great work by some people on field there are larger organizations like ORDI that work to cover much wider fields of Rare Diseases. Please visit https://ordindia.in/ to know more about other diseases and seek help. If you want to volunteer with us , choose the area where you want to work and take initiative and responsibility. Feel free to talk to us and together we can find something meaningful where you can contribute.
Final Note - We are also learning more about the CF ecosystem with regards to Indian Settings and try to capture various system to improve care and results as we move together in this journey. Let us know about your challenges and we will be happy to continue improving our onboarding guide.
Further Resources - Detail Oriented and exploratory