HHT Insurance Coverage in Danger!
Health Bill Would Remove Protection for HHT Patients!
Update: The House cancelled the scheduled vote for Friday, March 24. There has been no announcement as to is rescheduling.
If the American Health Care Act passes it would eliminate insurance coverage for essential health benefits mandated in the Affordable Care Act - including chronic disease management in HHT and other genetic diseases.
Contact Your Representative Now!
If phone lines are jammed, you can send an automatic email using Popvox to your representative.
Here is the link to the AHCA page: https://www.popvox.com/us/federal/bills/115/hr1628
You will need to sign up by entering your name, email address, and zip code. Then click the “Oppose” button under Add Your Voice on the upper right side of the page. You are then directed to a field to add your message and send electronically.
How This Would Affect You
- Individual states would be allowed to define “Essential Health Benefits,” meaning many of the basic services covered by the ACA -- such as prescription drugs, maternity care, mental health, emergency services, hospitalization – may no longer be covered.
- Because annual and lifetime limits apply only to essential health benefits, insurers could put a cap on how much care one receives, but not on how much people owe. Treatment costs for major diseases are incredibly expensive and could easily bankrupt those in need.
- Because treatments and medications for the HHT community can be very expensive, the elimination of essential health benefits essentially renders meaningless the ACA’s protections against insurance discrimination for those with “pre-existing medical conditions.”
- Even if you get your health insurance through an employer, the new legislation could dramatically increase your costs while also reducing benefits.
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HHT and Pregnancy
Most women with HHT can experience normal pregnancy and delivery with the same amount of risk as women in the general population. Though HHT pregnancies are sometimes considered “high-risk," this is not usually the case. While women with more concerning HHT symptoms can benefit from a “high-risk” clinic approach, women who experience minimal symptoms may not need it. The key is to consult with an HHT expert to help make the best decisions for you and your baby.
Remember that HHT affects each person differently, and symptoms are known to change over a lifetime. How HHT affects your body should guide your pregnancy planning and care. For example, if you only experience telangiectasia in the nose and have no abnormal blood vessels in the organs, there's no reason to think your pregnancy or delivery is high-risk. On the other hand, if you have lung AVMs, then several steps and precautions need to be taken to minimize risk, and in some cases this may be considered a high-risk pregnancy.
Here's What You Need to Know
Myth #1: Women with HHT are at risk of excessive bleeding from the uterus during or after delivery.
There is no evidence of this. In fact, women with HHT are no more likely to bleed excessively at delivery or after delivery than women in the general population.
Here’s why: People with HHT don’t have a clotting disorder. People with HHT bleed from parts of the body where they have abnormal blood vessels, not because of a regular injury, trauma or cut. The uterus is not a typical place for AVMs to occur in HHT, so there is no reason to expect women with HHT to bleed with delivery.
Myth #2: Women with HHT can’t have an epidural.
Rest easy - this is not the case. Most women with HHT decide to have an epidural, or give themselves the option to have one available in the moment. There is no evidence of increased risk of complications. We'll break it down for you.
Why is there concern? Many anesthetists and other doctors are worried about the risks of epidural anesthesia in women with HHT, specifically about puncturing a spinal AVM when they insert the epidural needle into the women’s lower spine. Approximately 1 percent of HHT patients have AVMs in the spinal canal, but the majority of HHT spinal AVMs are higher on the spinal canal than where the epidural is inserted.
No case has ever been reported in medical literature of an epidural causing spinal bleeding in HHT. Complications of spinal AVMs are exceedingly rare in adults (most are discovered during childhood). In fact screening for spinal AVMs isn't routinely recommended in adults with HHT (unlike screening for lung and brain AVMs) given how rare they are in adults. In other words, if there is a risk, it's so low no one has been able to document a case or quantify the risk. However, there is no study “ruling out” risk of epidural in HHT - so we call it a “theoretical” risk.
If a pregnant woman with HHT wants the option of an epidural, she should get the option. Meet with the anesthetist prior to delivery and have a discussion about all the risks,“theoretical” or otherwise. Many anesthetists will agree to proceed if the woman understands the risks.
Myth #3: Women with HHT should have a cesarean section to avoid bleeding and other HHT complications with labor and delivery.
There is no evidence to support the C-Section as a routine approach for HHT patients. We've already discussed the myth of excessive bleeding in #1 so let us continue to other assumed complications.
The second concern is a brain AVM rupturing when pushing at delivery. There is no evidence to support this worry, or that cesarean section is a safer alternative to vaginal delivery in people with brain AVMs. However, this situation needs to be handled on an individual basis. Screening for brain AVMs can be performed in early third trimester with an unenhanced MRI of the brain. If the MRI is negative, as it is for 90 percent of women with HHT, then there's no reason to be concerned.
If you do have a brain AVM, your case is considered high risk and needs to be discussed with a brain AVM expert and obstetrician. If a brain AVM is diagnosed, the usual recommendation is to treat within two or three months after delivery. As such, since treatment will be delayed anyway, some women opt to postpone the brain MRI until after delivery. This is not unreasonable, but may leave you and your physicians unnecessarily worrying about the possibility of brain AVMs and a false “high-risk” pregnancy.
There is also no evidence that a treated lung AVM is more likely to rupture and bleed during vaginal delivery. However, if you have an untreated lung AVM your pregnancy should be considered high risk. Screening and preventative treatment for lung AVMs should be done prior to pregnancy, when possible. If you are already pregnant, lung AVM treatment during Trimester 2 or 3 with embolization should be considered, but only at an expert HHT center. If you have lung AVMs that have been successfully treated (and recently reassessed), then lung AVMs are not a concern for pregnancy and delivery.
For most women with HHT, the main problem is nosebleeds, and though bothersome, this is not often a major concern during pregnancy. Some women with HHT have a more extensive issues, with AVMs in the brain or lungs, which may be more concerning. However, with the right screening, treatment and surveillance, most women with HHT can have normal pregnancy and delivery, with no more risk than women without HHT. Any patient with lung AVMs (treated or untreated) should follow pulmonary AVM precautions, including antibiotics before any procedures that can cause bacteria in the blood as well as using an air filter (bubble trap) any time there is an intravenous access.
- Faughnan, M.E., et al., International guidelines for the diagnosis and management of hereditary haem- orrhagic telangiectasia. J Med Genet. 48(2): p. 73-87.
- De Gussem, E.M., et al., Outcomes of Pregnancy in HHT(Abstract). Hematology Meeting Reports, 2009. 3(4): p. 10.
- Gershon, A.S., et al., Transcatheter embolotherapy of maternal pulmonary arteriovenous malformations during pregnancy. Chest, 2001. 119(2): p. 470-7.
- Shovlin, C.L., et al., Medical complications of pregnancy in hereditary haemorrhagic telangiectasia. QJM, 1995. 88(12): p. 879-87.
- Shovlin, C.L., et al., Estimates of maternal risks of pregnancy for women with hereditary haemorrhagic telangiectasia (Osler-Weber-Rendu syndrome): suggested approach for obstetric services. BJOG, 2008. 115(9): p. 1108-15.
- Wain, K., et al., Hereditary hemorrhagic telangiecta- sia and risks for adverse pregnancy outcomes. Am J Med Genet A, 2012.
- http://www.nichd.nih.gov/health/topics/high_risk_ pregnancy.cfm
ABCs of AVMs: Vascular Malformations of the Lungs and Brain in HHT
Dr. Miles Conrad is Associate Clinical Professor in the Department of Radiology at UCSF and Co-Director of the UCSF HHT Center of Excellence. Dr. Conrad received his MD from Dartmouth Medical School and his MPH from Harvard School of Public Health. He completed a Diagnostic Radiology residency and a fellowship in Interventional Radiology at University of Arizona. He specializes in the treatment of PAVMs.
Dr. Steven Hetts is Associate Professor of Radiology, Co-Director of the UCSF HHT Center of Excellence and Chief of Interventional Neuroradiology at USCF Mission Bay Hospitals. Dr. Hetts graduated from Harvard Medical School, and completed a Diagnostic Radiology residency and fellowship in Diagnostic and Interventional Neuroradiology at UCSF
Join Doctors Miles Conrad and Steven Hetts for a discussion on the diagnosis and treatment of brain arteriovenous malformations (BAVM) and an update on the latest lung AVM (PAVM) treatment followed by a Q&A period.
Cure HHT members will have access to unlimited webinars, discounted conference registration and much more. Please consider joining or renewing your Cure HHT membership so that you can participate in all activities within the HHT community.
Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. Beginning in May, Cure HHT members will have access to unlimited webinars, discounted conference registration and much more.
Ask the Doctor: Jason Hamilton
Q: Can excessive treatment for nosebleeds permanently harm my nose?
Dr. Jason Hamilton, Director of Plastic and Reconstructive Surgery at Osborne Head and Neck Institute: It's possible to develop a septal perforation, which occurs when cartilage separating the two nostrils (known as the septum) develops a hole or fissure. This can cause a variety of symptoms, most notably nose bleeding. In HHT patients, septal perforation is usually attributed to nasal trauma from aggressive laser or electric coagulation sometimes used in treating epistaxis.
A septal perforation alters the anatomy of the nose, affecting its function. The normal humidity in the nose is decreased by constant airflow across the weak or torn edges of the perforation, causing the site of the perforation to dry out, leading to a crusted or scabbed area likely to bleed. When left untreated, it causes further deterioration of the condition.
The surgical procedure to repair a septal perforation should be performed soon after a diagnosis, and not as a last resort. The goal is to restore normal nasal anatomy and humidification and to reestablish the structural integrity of the nose – it is not a cure for HHT-related epistaxis.
Ask the Doctor: Dr. Felix Ratjen
Q: Can kids with HHT play sports? What are your recommendations?
Dr. Felix Ratjen, Toronto Pediatric HHT Center: Regular exercise is important for everybody, and this certainly includes children who have HHT. Most children with HHT can participate in sports at all levels including competitive sports, but there are a few exceptions. Contact sports are not recommended for children with HHT who have brain AVMs unless they are completely treated; you should talk to your doctor about that, if you are unsure what the status is. For children with untreated pulmonary AVMs, if their oxygen saturation is not normal, strenuous exercise may put them at extra risk and I usually recommend against it until treatment of the AVM has improved the situation. Even if the oxygen saturation is fine at rest, this may change during exercise. In cases where this is not clear, I perform a formal exercise test in the clinic. This also often provides comfort to parents as the test can determine the "safe" level of exercise that their child can participate in.
Ask The Doctor: Dr. Brian Graham
Q: What are the risks and precautions an HHT patient should be aware of when getting a tattoo?
Dr. Brian Graham, Co-Director of University of Colorado HHT Center: I have come to the consensus that it should generally be safe. I'd recommend you not have a tattoo applied to a visible telangiectasia, as that may bleed quite a bit. Be sure that the skin was carefully cleaned at the site, such as with rubbing alcohol, to avoid any infection, and probably avoid areas that are less sterile such as in the pelvis.
If you have known pulmonary arteriovenous malformations (PAVMs), consider being extra careful by taking a single dose of an antibiotic at the time of the procedure, to avoid any bacteria released from the skin passing through a lung AVM and going to the brain or other places in the body and causing an infection.
As a more general precaution, make sure they use clean needles (to avoid getting infected with HIV or hepatitis) and stick to reputable places, rather than doing it “homemade."
Let’s Get Personal – HHT in Women
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Dr. Els Maria de Gussem is an HHT clinician in the Respirology Division at Grace Hospital, University of Manitoba in Canada. She has dedicated her career to developing an expertise in HHT, both in clinical care and research. Dr. de Gussem has performed a study on the influence of pregnancy in HHT along with studies on quality of life and life expectancy in HHT. She received the Robert I. White Young Clinician Award in 2009 for her clinical compassion and dedication to improving HHT care.
Join HHT Physician Dr. de Gussem for an in-depth look at the effects of HHT on the changing female body. She will discuss the impact of birth control, pregnancy and menopause as well as recommended management or treatment options for women with HHT.
- Hormonal changes in women through puberty, pregnancy and menopause.
- Pregnancy complications, prevention of complications, and recommended management during pregnancy in women with HHT
- Birth control in women with HHT
- Post-menopausal management of HHT-related symptoms and complications
- HHT and Pregnancy handout and Website links provided in the webinar
- SHARE this information and webinar link with your family members affected by HHT
Cure HHT is the cornerstone of the HHT community, advancing one common hope - to give those affected by HHT a chance for a normal life. This webinar series is just one of many ways we accomplish this mission. If you found value in this information, please consider making a donation NOW to keep this initiative moving forward. It is through the generosity of our donors that we can continue to provide this valuable education to the HHT community.
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Here is all the information, pre-written letters, materials, instructions and training you need to make an effective advocacy effort. There are no excuses - it's time to ACT NOW .
Email Your Legislators
Support the bill and message your legislators and ask them to co-sponsor the HHT DATA Act. Just enter your profile information, search for bill HR 1849, click the "support this bill button" and then tell them why. It only takes 2 minutes! Have all members of your household do the same thing. Bill Summary
> Get Started
Ask Your Family, Friends, Co-Workers, and Neighbors to Contact Their Legislators
Send your family, friends, co-workers, neighbors, etc. an email with the link above and ask them to support you by contacting their legislators. Every entry is directly emailed or delivered to your representative. Each office keeps records on how many emails they receive. You don’t have to have HHT to be an advocate.
Follow-Up with Your Legislators
Following-up with your legislator is very important! Check our sponsorship list regularly to see if your representative has joined the Cure HHT mission. If not, get on the phone with them or send them a letter.
> Find Your Senator >Find Your House Representative
Don't forget to send your Senator or Representative a thank you letter following the meeting. Here are some templates for you to work from!
> Senate Thank You > House Thank You
Meeting with your legislators at home in their district offices is one of the most effective methods in gaining their co-sponsorship. Legislators are usually in their district office when Congress is in recess. Here is a step-by-step to get you started. This is the chance to talk about how HHT affects you and your family face-to-face. Don't forget to bring the HHT DATA Act Factsheet for easy reference.
Get Petitions Signed
- Gain more support for the HHT DATA Act by organizing a petition drive. The petition could be signed by neighbors, friends, co-workers, associations you are a member of, your church, etc.
- Once the forms are complete, mail them to Cure HHT and we will personally deliver the petition to the Washington D.C. office of the Legislator.
- Return to: Cure HHT, P.O. Box 329, Monkton, MD 21111
Additional Legislative Documents
HR 1849 HHT DATA Act Summary 2015
HR 1849 HHT DATA Act Dear Colleague Letter
Sample - Dear Congressman Letter
Senate - Sample Appointment Request
House - Sample Appointment Request
CDC Final Report - HHT June 2009
These resources will help you successfully and locate your Senators and House Representatives as well as guide you through the communication and appointment process.
How a Bill Becomes a Law - written explanation
How a Bill Becomes a Law - chart diagram
Glossary of Congressional and Legislative Terms
Ask the Doctor: Mark Chesnutt
Q: What are the instances when it is permissible for an HHT patient to take a blood thinner?
Dr. Mark Chesnutt, Director of Oregon Health and Science University HHT Center: Many decisions in both life and medicine require that one balances the potential benefits and risks of an action, an intervention or a medication. This is true when one considers the use of blood thinners, especially for a person with HHT.
Blood thinners have been shown to significantly reduce the risk of harm and/or death in a number of conditions, including, but not limited to, heart attacks, atrial fibrillation, stroke and blood clots (both deep venous thrombosis and pulmonary embolism). However, in any patient, blood thinners increase the risk of undesired bleeding. The risk of nosebleeds and gastrointestinal bleeding while taking blood thinner may be higher in some people with HHT compared to those without HHT.
Experience from many HHT Centers of Excellence suggests that at least many HHT patients who take a blood thinner are able to do so without a serious complication and, therefore, are able to benefit from their use. At the present time, there is no good way to know who will have a complication from a blood thinner. Based on experience to date, there are no absolute contraindications for the use of a blood thinner in a person with HHT; blood thinners can be used with caution when there is a strong indication and potential benefit for their use.