Planning and Logistics
There are so many things that have to go into planning when you have an alloimmunized pregnancy. Finding a good doctor, planning transportation, figuring out where you will live, and how you will afford it are all huge concerns. We’ve talked about finding a doctor and interacting with medical professionals here (link), so here are some ideas to help with those other issues.
Some insurances will offer free transportation to doctor's visits. You will have to call your insurance and check. Many medicaid programs will provide this service free of charge, while other insurance programs will consider it an added bonus of their prenatal care program. Look into “Nonemergency Medical Transport” for your state or insurer. In some cases, churches and some nonprofits may also offer rides. Uber Health (a healthcare specific app) will provide free transportation to doctor’s visits. Lyft offers a similar program through it’s Lyft Business department.
Places to Stay
Look into staying at a Ronald McDonald house. These are places where families can stay for little to no cost (they may be asked for a $25 per day donation, but it is never required if you are unable to pay, you will still be hosted) while they or a child are receiving treatment. They offer Ronald McDonald Houses and Ronald McDonald Family Rooms (right in the hospital).
Finding the extra money to pay for the extra appointments, increased gas usage, and meals out can be a challenge. Some organizations offer grants to help cover these extra costs. Consider searching for “Medical Grant Programs” like the ones listed below:
Some of us have other children in the home. Finding childcare for the added visits can be a challenge. Here are some tips that may help.
Consider asking a close friend, neighbor, or church members if they would be willing to provide care once a month. Many times older adults whose children have grown will be happy to watch your child and experience the preschool stage for an afternoon. It is easier to get 4 people to agree to 1 day per month than it is to have them commit to a set time every week.
See if your local daycare has drop in rates or days. Some licensed childcare facilities will allow you to drop off your child for approximately $20 for the day with no commitment or regular requirements.
If you take your children with you, consider purchasing some special toys and activities to make a busy bag. This doesn’t have to be expensive if you don’t want it to be. By spending just $5 or $10, you can choose some new things that your child only gets at appointment days. What makes this work is that these toys, coloring books, etc are only allowed out on appointment days and they retain their “new-awesomeness” in the child’s eyes. It may help to occasionally rotate the activities in the bag.
Make the day a date. Spend time before or after your appointment with your children at the park. Give them your undivided attention - this can be a great chance to talk and share feelings too. Many fast food places offer a $1 or less ice cream cone, grab 2 and give your child a treat. Eventually appointment days will become special to the child and they will forget the appointments and remember the memories made with you on your special days together.
We all get hungry, or should I say hangry? Remember to pack some extra snacks for you to have before, during, or after your appointment. Things like rice cakes, jerky, granola bars, trail mix, and fruit will keep just fine in your bag for hours or days. If you need a bit of sugar to perk yourself or baby up, consider dried fruit - unlike chocolate it won’t melt in the car, but some kinds are even coated with sugar for a quick boost.
Cooking can seem like a monumental task after you’ve spent the entire day at appointments. After driving for an hour, waiting, having your scan, seeing the doctor, and driving home, it’s hard to find the energy to cook. Consider making several freezer meals ahead of time. There are many recipes available for free online and it is often cheaper to buy in bulk and make several meals at once (batch cooking). Freezer meals may be pre-cooked or not, but the one thing they all have in common is how easy it is to take the meal out of the freezer and pop it into the oven.
If freezer meals aren’t your style, consider investing in a slow cooker. Many of them can be found for under $30, and they have the benefit of allowing you to “set it and forget it”. You can toss meat, potatoes, and vegetables in the crock pot before you leave, and come home to the smells of a delicious home cooked meal that is ready to eat as soon as you walk in the door. There are many options available including “take out fake out” recipes, soups/stews, breakfasts, and even desserts. Crockpot meals can be frozen for quick grabbing, or made from scratch the morning of. There’s no wrong way to do them.
Being pregnant with antibodies is very stressful. It is very important to remember to take care of yourself. Take time to do things that you enjoy and to bond with your baby. Remember to dream with your partner and to do all of the fun baby stuff that you normally would. You may also want to join a peer-to-peer support group. These are groups of women with antibodies who have all been through at least one alloimmunized pregnancy. If you are interested in joining one, search on social media for keywords like “antibodies in pregnancy” or “alloimmunization”. It may also help you to know that postpartum depression and postpartum anxiety can happen during pregnancy. If you are struggling, talk to your health provider, there are options. We also have a page of emotional support resources, check it out here [link].
When it comes to getting approved for IVIG and Plasmapheresis to treat/prevent HDFN, your doctor will have to do most of the heavy lifting. He or she will need to be willing to advocate for you to the insurance companies and will probably need to write letters and make phone calls on your behalf. It is the doctor’s job to educate the insurance company on your medical condition and to stress the importance of the treatment procedures, and their necessity for your baby’s health. If you can, it helps to have a good working relationship with your MFM before treatment starts. IVIG and plasmapheresis treatments usually start around __ weeks. Prior to the start, some doctors require surgery to install a port or perma-cath. Getting prior authorization for these procedures can take time, so don’t wait until the week before treatment should start to find a MFM and expect them to get things set up for you. Below are some tips to help you get started with IVIG and Plasmapheresis for the treatment and prevention of severe HDFN.
Choose the right insurance before pregnancy if you can. For instance, if you have medicaid and open enrollment period is coming, try to find out ahead of time if United Healthcare, Blue Cross Blue Shield, or Cigna covers IVIG and which ones people have had good results with. Ask your doctor for the ICD 10 and CPT codes so you can call the companies and double check their coverage (this may be referred to as requesting an Assessment of Benefits). Sometimes a patient may not be approved under one code, but would be approved with a different ICD 10 or CPT code. You can also ask your doctor if they know which companies have covered this treatment in the past for their patients, and at what facilities. It is possible to call an outpatient center that your doctor works with, and ask them which insurances they accept. While it is the doctor’s job to get pre-approval for treatments related to your condition, you can help make the process easier with a little research into the different insurance options.
One of the hurdles to getting approval for IVIG and plasmapheresis involves proving medical necessity, and refuting the words “experimental” or “investigational”. Your doctor must make the case that the treatment is medically necessary and not considered experimental or investigational. There have been no randomized, double blind studies on IVIG and plasmapheresis for the prevention of HDFN. However, we have hundreds of case reports and smaller studies showing that IVIG and plasmapheresis works! Your doctor will need to make the case that this alternative treatment is better than the alternative - for instance, there is less risk of fetal loss and other comorbidities with IVIG/plasmapheresis than with an IUT. If your doctor can share these facts and demonstrate that IVIG and plasmapheresis is a medical necessity that would benefit you and baby, you have a better chance of getting the treatment approved. Getting a prescription from the doctor can go a long way towards showing necessity. A prescription needs to include the diagnosis, frequency, and the length of treatment. The exact specifics of your treatment will depend on your doctor and your unique case.
If insurance won’t cover the IVIG and Plasmapheresis, but the doctor is willing and thinks it’s a medical necessity, there are other options. You can call the hospital and ask for a patient advocate. He or she may be able to help you apply for financial aid from the drug manufacturers, grants, or even negotiate a lower rate or payment plan with the hospital.
If you must pay out of pocket or get reimbursed, be sure to get a detailed receipt containing diagnostic codes (ICD10) and treatment codes (CPT). You will need to put the treatments into a language that the insurance company understands. ICD codes (International Classification of Diseases) are diagnostic codes that tell the company what your diagnosis is. Some of the codes are detailed enough to tell which fetus and which trimester. CPT codes (Current Procedural Terminology) are assigned to specific treatments by the American Medical Association. CPT codes help with communication between medical specialists and insurers. Sometimes different ICD or CPT codes can result in getting IVIG and plasmapheresis approved when it was previously denied.
You can appeal! If the insurance company denies the treatment plan, you can always appeal. This will require meticulous note taking, immediate follow up, and repeated phone calls to the insurance company and the hospital billing department. Don’t get discouraged when your first few calls yield no results, just keep calling and asking to speak with different people. (name of the one department that tends to get this stuff done). Many times the initial response is always no, but when you move your request up the ladder to a different department, you will find someone who is more willing to work with you. Sometimes the insurance company will reverse the decision if they are provided with additional documentation such as medical notes and test results. The insurance company doesn’t want to spend their money unless it is helping - you may be able to demonstrate that the treatments are helping if you can show a decreasing or stabilizing MoM trend, making it to a further gestational age before first IUT compared to previous pregnancies, or decreased levels of antibodies. Anything that the doctor can use to show that your baby’s condition is improving will help improve your chances of getting approval.
Much of the information above will apply to getting approval or reimbursement for the cffDNA test to determine baby’s antigen status. In this case, it will be harder to show that the test is helping, but you can show that the results of this test will reduce the cost to the insurance company. If the cffDNA test comes back negative, then the company can save the cost of weekly appointments, MCA scans, titer checks, and more. The cost savings far outweighs the $1000 price tag for the cffDNA test.