Yup. This week I turn 65, and I am officially on Medicare! It makes turning 65 a joyous event. Really!
Switching healthcare policies over to Medicare was surprisingly easy. But partly this is due to my previous work on hemophilia and healthcare. Back in 2005, we were the ones to alert the community to the “Coming Storm” in insurance. We alerted the community that choice was going to start getting restricted; you would need to accept tiers of medicine, PBMs were going to dominate, and choice of factor may no longer exist. All this in the name of healthcare cost-cutting. And it all came to be.
We took our message out on the road, in a live-action form of our newsletter PEN’s Insurance Pulse, calling the workshops Pulse on the Road. We did this for 10 years. I must say that Michelle Rice, mother of two with hemophilia and formerly with the National Hemophilia foundation was our healthcare insurance guru, and taught me so much!
And now I get to use it. Medicare is for anyone over age 65. It’s an entitlement program; you start contributing to it when you start working, kind of a forced saving plan. It’s made up of several parts. Part A is free of cost, but has limited healthcare coverage. It covers medically necessary inpatient hospital care (including rooms, meals, general nursing and drugs), skilled nursing facility care, some nursing home care (if following an inpatient hospital stay) and hospice care.
Part B is optional but I strongly urge everyone to get it; it doesn’t cost that much per month as an add on. It covers: medically necessary doctor services; outpatient medical care; durable medical equipment; some preventive care and other medically necessary services Part A doesn’t cover, such as ambulance services; cardiovascular, cancer and diabetes screenings; and laboratory services. Pretty important stuff, especially as you age.
Part D covers prescription drugs.
Our community is aging, which is good news! But people with hemophilia from previous generations, now in their 60s and 70s will have health issues, such as joint deterioration. It really pays to advocate, ask lots of questions and learn more about Medicare. You can enroll during the month you turn 65, but you should start researching it and apply for it three months before that. Go to https://www.medicare.gov/ to learn how to apply.
Until then, enjoy your youth! And stay on top of all insurance, Medicare or not.
The recent decision by the Supreme Court regarding abortion rights had me thinking about genetic testing and hemophilia. I recall that when I decided to have another child, following my first who had hemophilia, doctors were pushing for genetic testing. Why? I asked. We had already decided that if a sonogram showed a boy, we would do another C-section. Otherwise, let nature take its course. The doctor kept offering genetic services, but… when I suggested that he wanted the test in case a parent might want an abortion if genetic tests showed hemophilia? The topic not everyone wants to discuss directly? And that would not happen in my case regardless? The conversation ended, happily on both sides.
I recall a case many years ago of a British couple who sued their doctor, because he told them that their unborn child would not have hemophilia. And he indeed did. The implication was that despite having a beautiful baby boy, they were arguing that they would have aborted the fetus, had they known he had hemophilia. So they wanted monetary compensation for bringing their baby with hemophilia to term.
Genetic testing, abortion… topics peppered with landmines of emotion, legality, and belief systems.
But the bottom line is: Do you wonder or know if you or your daughter might be a carrier for a genetic mutation that causes hemophilia? This topic also comes up in Facebook groups from time to time. Supreme Court aside, it’s a good question to consider.
There’s a chance that a female is a carrier if she is the mother, grandmother, or sister of a biological son, grandson, or brother with hemophilia; or the aunt, cousin, or niece of a male with hemophilia related through her mother. If you or your daughter fits any of these scenarios, you might want to consider genetic testing to determine carrier status. There’s no need in the case of a female born to a male with hemophilia; she is an obligate carrier and will have the gene for hemophilia on one of her X chromosomes.
Genetic testing identifies changes in the normal structures of proteins, genes, and chromosomes. An integral part of genetic testing is the counseling that goes with it, to help patients understand and adapt to medical, psychological, and familial implications of genetics contributing to disease.
Many large health insurance plans cover genetic testing when it’s recommended by a doctor. Often, genetic testing for hemophilia is a covered benefit because learning hemophilia carrier status can impact medical care. Many insurance companies consider genetic testing medically necessary if a person is at risk for inheriting a disease or disorder.
But insurance coverage for genetic testing is inconsistent among health insurance companies, and even within a single company’s plans.
There are pros and cons to genetic testing. It’s essential to consider the risks of not being tested, given chances of being a carrier, as well as the risks of being tested.
Some pros? Knowing carrier status before a medical procedure can help prevent bleeding complications. It’s probably good to test factor levels of females with a family history of hemophilia at as early an age as possible. According to NHF’s Medical and Scientific Advisory Council (MASAC), at least 50% of females who are carriers for hemophilia also have factor levels below 50%, putting them at risk for excessive bleeding during delivery of a baby as well as during a surgery, accident, or menstruation.
It’s also important that your daughter understands the risks of being tested. For privacy reasons, some people choose to pay out-of-pocket for genetic testing so that the testing and results do not appear in their medical record. Ask a genetic counselor about the actual cost of testing before consenting. In 2017, eligible potential carriers could seek carrier testing at no cost through NHF’s “My Life Our Future” program at qualified hemophilia treatment centers.
It can be empowering to know if you’re a carrier of a genetic mutation that causes hemophilia. A woman who knows her risk of passing a bleeding disorder on to her child can better advocate for herself. And for her rights and beliefs—whatever they may be— on a national scale.
There’s been a lot of news lately about gene therapy. Just Google “hemophilia and gene therapy” to catch up on what’s happening.
A big concern is how will payers react to gene therapy when it does become available, given how much they try to contain costs?
We covered this topic in a previous issue of PEN’s Insurance Pulse (now discontinued) and it might be good to revisit
First, payers (insurance companies, state Medicaid programs, self-insured employers, and others) will probably pay for new therapies, including gene therapy, but the payers will very likely have prior authorization criteria that define which patients can access these products.
Second, new therapies probably won’t be available immediately after FDA approval. Why? Gene therapy products will probably be expensive. Payers will want time to understand how they work and for whom they will be appropriate. For example, one gene therapy clinical trial excludes patients with inhibitors. Another excludes patients with HIV. If a product hasn’t been tested in a segment of patients, then payers and physicians probably won’t use it for those patients; it’s a matter of safety.
Now, let’s go back to cost: Payers don’t have endless buckets of money. A commercial insurance company’s “income” is made up of the monthly premiums, copays, coinsurances, and deductibles that we pay. Its “expenses” are the medical claims paid to providers (including doctors, hospitals, pharmacies, and labs) and everything else it takes to run the business (employee salaries, building rent, and so on).
What does this mean to our community? Everyone who is eligible for any expensive therapy may not be able to get it immediately.
What can you do if they want to receive a new therapy?
• Talk to your hemophilia treatment center (HTC) team or hematologist. They can help you understand if a particular therapy might work for you.
• If you and your medical team decide to move forward, you’ll have to justify to your payer why this is the right therapy for you. This takes time, and your insurance company may or may not approve it.
• Be prepared to help your medical team make the case for you. That might include extra tests, accurate factor logs, and other documentation.
Remember that insurance companies are not the enemy! To get the best care, you and your healthcare team need to work with them, not against them.
National Hemophilia Foundation and Hemophilia Federation are good places to turn to for information on educating payers on bleeding disorders and also to enhance the relationship between these payers and HTCs. As a community, we need to be responsible stewards of healthcare dollars while getting excellent care. Fortunately, every advanced therapy for bleeding disorders has eventually been covered by most insurance plans–let’s hope this happens fro gene therapy across the board for all.
This is a paid public announcement from Pfizer and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to a Pfizer website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.
At NHF’s Social Worker Insurance Workshop in Baltimore on January 16, there were some great questions asked from the audience concerning the Marketplace. Social workers know they will most likely be the first line of defense for patients with bleeding disorders facing the many challenges of the ACA. Here are some questions asked and other snippets of information from the workshop.
Q. What if you don’t like the insurance plan options in the Marketplace. How do you file a
special appeal [concerning coverage]?
Go to Healthcare.gov; there is a link for an appeal. Appeals are
worthwhile because sometimes codes are entered in wrong, and sometimes people
get approved for procedures and benefits that were originally denied.
Is there a limit to the number of appeals?
Q: But after you pick a plan and don’t like it, what if you just don’t pay the next month’s
premium? Won’t you just get canceled and then you can choose another plan? Isn’t
that easier than an appeal?
There is an open enrollment time, so you can’t choose to switch outside that time period. After March 31 you can’t get into a “QHP” (an insurance plan that is certified by the Health
Insurance Marketplace, provides essential health benefits, follows established
limits on cost-sharing (like deductibles, copayments, and out-of-pocket maximum
amounts), and meets other requirements.)
Joanna Gray, ofCRD Associates told us that theACA says HTCs must be included in-network. But… plans don’t have to include any specific medical procedure. They only need to cover “sufficient” providers, and they don’t say who those providers are. The ACA hasn’t come through in its promise. NHF says be careful! Don’t pick a plan that doesn’t include your HTC or product, because now it’s legal for providers to avoid HTCs. We can’t change the policy for this year. Maybe next? We need to complain to get changes made.
NICOLE of NHF said that every state has its own definition of EHB (essential health benefits). So picking a plan is harder, because there are more plans, and picking one that covers what you need is hard.
Q: To use the Marketplace, you must be a legal resident. What happens to legal immigrants,
who are not citizens?
In Nevada, they are currently covered under high-risk pools but will lose this soon (the pools are closing). Are there alternatives?
No. You can still get emergency medical through Medicaid; and of course, anyone can buy insurance in the commercial marketplace.
JoAnn Volk of The Center on Health Insurance Reform, Georgetown University Health Policy Institute, said that six states will not enforce the ACA: Alabama, Missouri, Oklahoma, Texas, and Wyoming. The ACA gives primary responsibility to states to enforce the rules, but there are 10 state benchmarks (Essential Health Benefits) that must be followed, and will be reviewed by the feds.
If you find a QHB but it doesn’t include factor, JoAnn thinks that the appeals process will work, recommending that people get their drugs for 20 days, during the appeals process, even if they are not on formulary.
Q: What’s the advantage of going into the Marketplace?
The advantage of going into the Marketplace is subsidies; you can be eligible for discounts within limits. To buy into a Marketplace, you have to be physically in the state, not incarcerated and be legally present. There are no other limits.
Q: When we couldn’t find what we were looking for (was our hematologist covered), and we called the website, we couldn’t get any help.
Don’t call the health.gov website. Call the plan provider. Sometimes it’s best to work with your HTC contracting department! They will know who is in network.
And there is so much more information! Be sure to keep reading your HemAware (from NHF), Pulse (from us), and tap into your chapter’s or your local hemophilia organization’s efforts to educate their families about insurance changes. Lots happening; don’t miss deadlines and opportunities by not staying on top!
Great Book I Just Read (Again)
Ada Blackjack: A True Story of Survival in the Arctic by
Jennifer Niven [Kindle]
A secret exploration to Wrangle Island, in
the Behring Sea, in September 1921 goes terribly wrong when food runs low and
sea ice keeps a relief ship from rescuing the stranded four young men and one 25-year-old
Eskimo woman trapped there. The trip sets off an international crisis when
Russia, Great Britain and the US learn that the trips leader, the opportunist and
greedy explorer Vilhalmur Stefansson, who never even went, was trying to claim
the island for Canada. Only Ada survives the horrible conditions, and her
return sets off a media firestorm. Did she kill her companions? How did she survive?
Diaries are stolen, Ada is hounded and used by the press and her own sponsors.
She becomes at once a hero and a villain. Fantastic read and Ada will amaze you
with her spirit and ingenuity. Her real survival started when she returned home.