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Since the U.S. Food and Drug Administration approved the first intravenous immune globulin (IVIG) product in 1981, IG has experienced a sustained record of near-continuous demand growth. More than 35 years after they were first introduced, demand for IG products continues to grow more than 8 percent a year. In 2018, as it has over each of the past several years, demand for IG products grew by more than 7 million grams. Collectively, IVIG and subcutaneous IG (SCIG) product shipments last year approached 88 million grams. Even though there are currently 15 IG products available today, this demand growth nevertheless poses two special challenges for IG manufacturers: 1) they must forecast and invest in plasma collection facilities to ensure sufficient additional donor plasma is available to process into IG products, and 2) they must plan, invest and provide adequate lead time to construct and secure regulatory approval to operate new or expanded fractionation (how plasma is manufactured into IG products) and related IG production facilities. IG manufacturers are making every effort to address these issues. In fact, every major plasma fractionator is investing in new production capacity, and manufacturers are producing IG products at top capacity. In addition, some new products are coming to market this year, and one that was removed from the market is being reintroduced. It is hoped these efforts will help to better meet demand in the near future. If you are a patient who has been told future treatments with your brand of IG will not be possible, here are some steps you can take:
IG Living will be hosting a Reader Teleconference today at 4 p.m. Pacific Standard Time (6 p.m. Central Standard Time; 7 p.m. Eastern Standard Time) to discuss increased IG demand and the impact it is having on some patients. We encourage readers to sign up for this teleconference and to submit questions prior to the date. Only presubmitted questions will be addressed during the teleconference due to time constraints. To sign up for the teleconference, go to: www.igliving.com/ life-with-ig/ readers-online-forum.html “Then her life changed overnight.”
Rachel Maynard was a typical little girl before the new year. She enjoyed school, ballet and playing with her friends. Then her life changed overnight. Rachel, 8, was diagnosed with juvenile dermatomyositis, and the rarity of the disease and severity of her case took a heavy toll. Cheryl said stress and exposure to other illnesses may have led to triggering JDM in Rachel. Cheryl’s two children, Rachel and Dylan, 12, switched schools from Tucson to Sahuarita and then back to Tucson. Plus, they visited family in California over the holidays and Rachel was exposed to strep throat. After New Year’s, Cheryl said Rachel’s otherwise good health took a sudden turn. Rachel’s diagnosisRachel’s parents first took her to Banner University Medical Center in Tucson when she developed sores in her mouth, a rash on her face and had difficulty walking after New Year’s. At first, UMC thought Rachel had strep throat and released her, but as Rachel’s condition worsened, the Maynards decided to take her to Santa Cruz Valley Regional Hospital. However, Rachel received the same diagnosis, Cheryl said. A few more days passed with no improvement so the Maynards went back to UMC. This time, the hospital diagnosed Rachel with JDM and returned with a low-dose treatment of steroids, which didn't work, Cheryl said. With no juvenile rheumatologist specialists in Tucson, the Maynards were transferred to Phoenix Children’s Hospital. There are only three specialists in Arizona and they are all in Phoenix, she said. "In Phoenix, even there, they don't have the experience like anywhere else in the country," Cheryl said. "So they dealt with some, maybe a handful of JDM, but Rachel’s case was severe because she was decreasing in muscle strength day by day. We fought the general pediatric team because they were forcing her to take medication by mouth." Cheryl said Rachel was having trouble with oral medication because of her weakened muscles. The Maynards met another family at the Children’s Hospital whose child also had juvenile myositis and gave them the information for a specialist in Washington, D.C. The specialist consulted with the Maynards and developed a new treatment plan that began to improve Rachel’s condition. By this time, Rachel had already spent a week in the intensive care unit and required a breathing tube. Rachel spent January through May in the hospital undergoing treatments, observation and rehabilitation. "I think if we would have gotten the right treatments right from the beginning we could have avoided going to the ICU, we could have avoided losing all of this muscle strength and now she’s having to relearn how to walk and all of that," Cheryl said. "Because when we got to Phoenix she was still able to take steps." Rachel’s rehabilitationRachel has been doing regular therapy sessions at Tucson Medical Center since leaving Phoenix Children’s Hospital. During a recent session, Rachel gave her therapist a couple of high fives from her wheelchair while her brother, Dylan, sat next to her. The high fives weren't just given for accomplishments – they were a display of the progress Rachel has made since leaving the hospital. "You know, you take for granted your kids walking," Ray said. "But to see her stand there and take four or five steps forward, you know, three or four months ago (she) wouldn't have." That progress has only been possible through the Maynards' determination. Five days a week they make the long trek to TMC for Rachel’s rehab sessions with some additional sessions on the weekends. She typically has 10 sessions of 40 minutes Monday through Friday. Rachel also does water therapy at home in the family pool most evenings. "The pool is an escape," Ray said. "It’s a chance for her to be a kid without the things that come with the JDM — the hard to walk, lack of strength. In the pool she doesn't have lack of strength, she can be independent. She was a very independent little girl." As she floated in her backyard, Rachel was quick to say the pool is good therapy and pretty fun, too. All of this effort doesn't come without stress and sacrifice. Between work, caring for both children, financial costs and meeting Rachel’s medical needs there is some natural strain the Maynards have had to learn to deal with. "It’s a new normal," Ray said. "We're both self-employed and while the kids were in school we always had a moment to go have lunch together, spend some time together. There’s none of that. It’s all for (Rachel) and we gladly do it, it’s got to be that way. There’s tension sometimes between us — one feels like they're working more than the other." And even though Cheryl and Ray may have to deal with the tension, they don't stay mad with each other at the end of the day, he said. Raising awarenessWhat the Maynards want most is to raise awareness about juvenile myositis in the hopes other parents may be able to recognize the signs and get treatment quicker. "Check out those aches and pains," Ray said. "What we thought was a growing pain, muscle soreness, was a muscle breakdown—not just a growing pain." Cheryl wants parents to be the best advocates they can be should they have a child facing a similar situation, she said. The Maynards credit having met the family at Phoenix Children’s Hospital with connecting them to new resources that helped improve Rachel’s condition. Now they want to be a resource for other families to point them to valuable sources of information like the Cure JM Foundation or specialists like Rider who can help them develop treatment plans. Rachel has made progress since leaving the hospital. While she hasn't fully recovered, the Maynards are hopeful she'll continue to progress and gain strength. They also hope Rachel, who will be home-schooled in the fall, will eventually be able to return to campus. Excerpts taken from the July 30th Green Valley News piece by Jorge Encinas JOIN US AT A WALK NEAR YOUCome together to support children, teens, and young adults fighting Juvenile Myositis. REGISTER HEREFind a Walk Strong® event near you:
Contact us at walks@curejm.org for more information or to get involved. UPCOMING EVENTSLearn more or RSVP here.
Contact info@curejm.org for more information and to get involved. Do you have a story you would like to share? Contact enews@curejm.org |
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